Alumna turns end-of-life conversations from dread to discovery

A hospice and palliative care physician hosts a radio show that aims to revolutionize how we discuss what to many is the last great taboo: death

BY Susan Bell

Dawn Gross interviews her first mentor, Jeffrey Mandel, a hospice and palliative medicine doctor, during the launch of her radio show Dying to Talk.
Dawn Gross interviews her first mentor, Jeffrey Mandel, a hospice and palliative medicine doctor, during the launch of her radio show Dying to Talk.

Dawn Gross ’89 knows how to talk about death.

“I’ve asked hundreds of terminally ill patients, ‘If I had a magic wand, what would you wish for?’ And not one of them has ever answered, ‘Cure me,’ which is staggering to me,” said Gross, a hospice and palliative care physician since 2007.

Instead, patients respond by asking for something that brings them closer to who they truly are, she said, whether it’s being with family or spending time in their gardens.

Gross, who earned her bachelor’s in psychology and neuroscience from the USC Dornsife College of Letters, Arts and Sciences, has years of experience supporting patients with life-threatening illnesses in their own homes. She is currently a member of a hospital-based palliative care team at the University of California, San Francisco.

Just listen

Her first job, she said, is to listen.

“People have a hard time articulating or even knowing what is most important to them when they’re struggling with uncontrolled symptoms,” she said, “whether it’s nausea, difficulty breathing or pain.”

Once those symptoms are brought under control, she helps patients plan their goals of care and helps them identify and realize what they really want to do with the time left to them.

Gross said she’s profoundly grateful for the opportunity to practice her chosen specialty.

001“It’s not depressing,” she said. “It is sad, and I think to untangle the two is important for people to do. But what we do — being with people and supporting them in the things that matter most in their lives — is a gift. I fall in love with people immediately, so when they die, am I sad that they die? You’d better believe it. But what I’m left with is immense gratitude for having gotten to know them and be part of their lives, and hopefully for helping to make their lives the way they wanted.”

A new openness

In January, Gross began hosting Dying to Talk, a public radio show that aims to revolutionize the way people discuss death.

“People are averse to talking about death, but I’ve noticed that once you give them permission to do so, they really are dying to talk,” she said.

“It’s really exciting to have now been given a platform to try and make this conversation accessible to people in an unintimidating format that can also provide anonymity.”

Many forums now exist worldwide for conversations around death, including so-called “Death Cafes,” which bring total strangers together to sit down and discuss death. Gross noted that The New York Times recently ran a year-long series of op-ed pieces and stories about death titled “The End.”

“If you a look at any media outlet, there’s an article every week about death,” she said. “To me that suggests people are eager to talk about it and now we’re giving them permission to do so.”

A very personal inspiration

One of her greatest inspirations in pursuing a specialty in hospice and palliative care was her father, who had always been clear he wouldn’t seek aggressive, curative therapies to prolong his life. When he became terminally ill, he questioned traditional care options, asking, “Why is no one asking me what I want?”

Although her father was eventually able to die in his own home under hospice care, Gross said he taught her to want to ask those questions and to help the rest of the family try to listen to what he needed.

“Watching how my family learned to accompany him on his journey was eye-opening and made me more curious about how to support patients and families at such times.”

Alumna Dawn Gross’ love of end of life conversations shaped her decision to specialize in hospice and palliative care. (Photo/Gurusurya Photography).
Alumna Dawn Gross’ love of end of life conversations shaped her decision to specialize in hospice and palliative care. (Photo/Gurusurya Photography).

While her father was sick, Gross’ mother was simultaneously confronted with a very serious illness.

“My mother has a very different approach to her life and therefore a very different outlook and approach to how she will die,” Gross said. “Seeing these two very different ways of navigating life has given me permission to discover new ways to raise this conversation.”

A fairy godmother

Born in Northern California, Gross spent her teenage years in Portland, Ore. After tagging along on a college tour of USC with her older brother, she decided she liked the university. At age 16, she joined her brother at USC as a resident honors scholar in her senior year of high school.

“I was intrigued by science but always hated the sight of blood,” she said. However, in her freshman year, she chose a biology option, “Introduction to Neuroscience: Man, Mind and Machine” taught by William McClure, now professor emeritus of biological sciences.

“I remember my first day in that class. Professor McClure began to map out on the board how the brain works. I was hooked immediately.”

Admitted into the psychology honors program, Gross focused on neuroscience research, helping map the circuitry of memory. She did a post-baccalaureate premed program at Mills College and an M.D., PhD at Tufts University in Boston.

“I wanted to be a scientist,” she said, “but medicine snuck up on me. It wasn’t until I was in fellowship at Stanford, training in hematology and bone marrow transplants that I realized I loved being a physician because I loved having end-of-life conversations. That was something completely unexpected, and it shaped my decision to go into hospice and palliative care.”

End-of-life conversations are something that many doctors — trained to heal, not to discuss death — find difficult. Why does Gross cherish the experience?

“In my USC admission essay, I talked about wanting to major in psychology and inspire people to reach their highest dreams and then reach higher still,” she remembered. “Now, that’s all I do everyday. I see myself as a fairy godmother. When you’re facing your own mortality, what becomes essential rises to the top and everything else melts away. All you’re dealing with then is what matters most. It’s an extraordinary conversation to get to be a part of.”

Complete Article HERE!

Brené Brown on Empathy

What is the best way to ease someone’s pain and suffering? In this beautifully animated RSA Short, Dr Brené Brown reminds us that we can only create a genuine empathic connection if we are brave enough to really get in touch with our own fragilities.

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A daring exhibit asks dying people: How do we make the most of living?

By Bob Tedeschi

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Claudia Biçen, an artist based in San Francisco and London, spent the past two years interviewing and sketching hospice patients. She was convinced, she said, that dying people could help answer the question of how to live.

The result is a new multimedia exhibit, “Thoughts in Passing,” featuring nine sketched portraits and brief audio narratives in which the patients reflect not only on what it’s like to be dying, but on the lives they led.

The exhibit, completed in recent weeks and which will be shown in San Francisco, has already generated a passionate response. It is likely to be shown in other cities, and can also be seen online.

“Doing this felt like shining a light into this very dark, scary area for me and I’m sure for lots of people,” Biçen said in an interview. “It’s made me feel in my life more. I’m more in each moment.”

Born 30 years ago in London to a mother who brought home orphaned kittens and puppies for foster care, Biçen often held the animals as they died, and she grew accustomed to “the idea of death being close by.”

She earned degrees in psychology, philosophy, and anthropology before romance brought her to San Francisco, where she sketched portraits of family members. The work earned the attention of local galleries, but failed to deliver lasting satisfaction. Deeper wisdom, she thought, might be found in subjects facing death.

Biçen asked Bay Area hospices to find patients to sit for portraits and reflect on life and death, and in 2014 the first candidates emerged. She met several times with each, posing the question: What does it feel like to be dying? They had never been asked the question, they told her, and they had much to say.

She retreated to a studio, where she surrounded herself with photographs of her subjects and audio recordings from their meetings. Just 400 words would make the final audio cut. In the portraits, she would embed words taken from fragments of their conversations.

One subject, Jenny, is an artist herself. Written on her blouse are allusions to time spent locked in a mental institution with the criminally insane. In her audio recording, she tells of a childhood of being kept in an attic by foster parents, the terror of shock therapy, her later discovery of art, and the peace she found in it.

“I wonder about people who never ever know high peace,” Jenny says. “And I felt lucky that I knew. Little old nobody me could get high peace.”

Biçen’s pencil sketch of Jenny will hang in the Smithsonian’s National Portrait Gallery starting March 12 — a significant achievement for an artistic project, but one that doesn’t in itself speak to Biçen’s more spiritual achievements.

Experiencing her exhibit, even online, is like stumbling onto an exquisite, futuristic cemetery: portraits that capture the subjects’ essence; spoken words that distill their feelings on life and death; written words that hint at experiences that shaped them.

On screen, the portraits fade to black before their voices go silent, leaving viewers to confront their own reflection on the screen as patients offer their final thoughts.

The exhibit begs the question: How will you be when the time comes?

Complete Article HERE!

The Top Five Regrets of Dying People

By Bronnie Ware

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A nurse in end-of-life care shares the most common regrets of the dying

When you are on your deathbed, what others think of you is a long way from your mind.

For many years I worked in palliative care. My patients were those who had gone home to die. Some incredibly special times were shared. I was with them for the last three to twelve weeks of their lives.

People grow a lot when they are faced with their own mortality. I learned to never to underestimate someone’s capacity for growth. Some changes were phenomenal. Each experienced a variety of emotions, as expected, denial, fear, anger, remorse, more denial and eventually acceptance. Every single patient found their peace before they departed though, every one of them.

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People grow a lot when they are faced with their own mortality

When questioned about any regrets they had or anything they would do differently, common themes surfaced again and again. Here are the most common five:

1. I wish I’d had the courage to live a life true to myself, not the life others expected of me.

This was the most common regret of all. When people realize that their life is almost over and look back clearly on it, it is easy to see how many dreams have gone unfulfilled. Most people had not honoured even a half of their dreams and had to die knowing that it was due to choices they had made, or not made.

It is very important to try and honour at least some of your dreams along the way. From the moment that you lose your health, it is too late. Health brings a freedom very few realize, until they no longer have it.

2. I wish I didn’t work so hard.

This came from every male patient that I nursed. They missed their children’s youth and their partner’s companionship. Women also spoke of this regret. But as most were from an older generation, many of the female patients had not been breadwinners. All of the men I nursed deeply regretted spending so much of their lives on the treadmill of a work existence.

By simplifying your lifestyle and making conscious choices along the way, it is possible to not need the income that you think you do. And by creating more space in your life, you become happier and more open to new opportunities, ones more suited to your new lifestyle.

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We often regret the things we didn’t say

3. I wish I’d had the courage to express my feelings.

Many people suppressed their feelings in order to keep peace with others. As a result, they settled for a mediocre existence and never became who they were truly capable of becoming. Many developed illnesses relating to the bitterness and resentment they carried as a result.

We cannot control the reactions of others. However, although people may initially react when you change the way you are by speaking honestly, in the end it raises the relationship to a whole new and healthier level. Either that or it releases the unhealthy relationship from your life. Either way, you win.

4. I wish I had stayed in touch with my friends.

Often they would not truly realize the full benefits of old friends until their dying weeks and it was not always possible to track them down. Many had become so caught up in their own lives that they had let golden friendships slip by over the years. There were many deep regrets about not giving friendships the time and effort that they deserved. Everyone misses their friends when they are dying.

It is common for anyone in a busy lifestyle to let friendships slip. But when you are faced with your approaching death, the physical details of life fall away. People do want to get their financial affairs in order if possible. But it is not money or status that holds the true importance for them. They want to get things in order more for the benefit of those they love. Usually though, they are too ill and weary to ever manage this task. It all comes down to love and relationships in the end. That is all that remains in the final weeks, love and relationships.

Many don’t realize til the end that happiness is a choice
Many don’t realize til the end that happiness is a choice

5. I wish that I had let myself be happier.

This is a surprisingly common one. Many did not realise until the end that happiness is a choice. They had stayed stuck in old patterns and habits. The so-called ‘comfort’ of familiarity overflowed into their emotions, as well as their physical lives. Fear of change had them pretending to others, and to their selves, that they were content. When deep within, they longed to laugh properly and have silliness in their life again.

When you are on your deathbed, what others think of you is a long way from your mind. How wonderful to be able to let go and smile again, long before you are dying.

Life is a choice. It is YOUR life. Choose consciously, choose wisely, choose honestly. Choose happiness.

Complete Article HERE!

The Wildest Rumpus: Maurice Sendak and the Art of Death

By Katie Roiphe

Nothing informed the writer’s work so much as his abiding fascination with mortality and menace.

FILE - In this October 1988 file photo, author Maurice Sendak, creator of the best-selling children's book "Where the Wild Things Are," checks proofs of art for a major advertising campaign in his Ridgefield, Conn., home. Sendak died, Tuesday, May 8, 2012 at Danbury Hospital in Danbury, Conn. He was 83.
In this October 1988 file photo, author Maurice Sendak, creator of the best-selling children’s book “Where the Wild Things Are,” checks proofs of art for a major advertising campaign in his Ridgefield, Conn., home. Sendak died, Tuesday, May 8, 2012 at Danbury Hospital in Danbury, Conn. He was 83.

Maurice Sendak had always been obsessed with death. He drew through his obsession, used it. He drew lions that would swallow you; he drew wild things that gnashed their terrible teeth; he drew faceless hooded goblins stealing babies out of a window; he drew fat bakers who’d bake you up in a pie; he drew a 9-year-old pig that promised he would never turn 10. He drew funny, charming, cheerful, haunting near-deaths. He drew narrow escapes, popping up, resurrection.

He knew what it was like to be so depressed that dying did not seem crazy or outlandish or remote. He had a kind of intimacy with death, with the idea of it, anyway.

Even as a tiny child in Brooklyn, Maurice was unusually alert to the prospect of dying. He was floored by every childhood sickness—measles, scarlet fever, double pneumonia. “My parents were not discreet,” he said. “They always thought I was going to die.” He laid out the toy soldiers on the blankets of his sickbed. He watched other children play through the window.

One day his grandmother, who had emigrated from the shtetls outside Warsaw, dressed him in a white suit, white shirt, white tights, white shoes, and took him out to the stoop to sit with her. The idea was that the angel of death would pass over them and think that he was already an angel and there was no need to snatch him from his family.

During one illness Maurice had as a toddler, his mother found him clawing a photo of his grandfather that hung above the bed; he was speaking Yiddish, even though he only knew English. She thought a dybbuk was trying to claim him from beyond the grave, so she tore up the photograph. She said she burned it, but years later Maurice found the torn-up pieces in a Ziploc bag among her possessions. He had a restorer put it back together and he kept it in his house, this grandfather calling him to the grave.

The general message from his family seemed to be that he should be grateful to be alive, that his continued existence involved some aspect of luck that should not, if he was smart, be pushed. When he was very small, his parents told him that when his mother was pregnant they went to the pharmacy and bought all kinds of toxic substances to induce a miscarriage, and his father tried pushing her off a ladder. They hadn’t wanted a third child. Why would they tell a tiny child this? As a famous artist, later in life, he brushed the question off in an interview, as though it wasn’t in fact a big deal—they were harried immigrants, they didn’t need another mouth to feed, though surely something deeper was etched into his sense of himself. He was unwanted, unwelcome, somehow meant to die, meant to be carried off. He said once, “I felt certain my mother did not like me.”

There is a formal photograph of his dumpling-shaped mother, her wavy hair chin length, with her three wary children, the wariest of all being baby Maurice, who is dressed in a white bonnet and appears from his scowl to already be seeing some pretty wild things. She is looking at the camera as if it might at any moment leap out and attack her. Theirs was not a happy or relaxing home. Sadie Sendak was often furious. She had trouble with warmth. The siblings turned to one another, sometimes sleeping together like kittens, three in a bed. Maurice, who struggled in public interviews to be generous to his mother, said that she should never have had children, and distant, absent, prickly, punishing mothers would be a big obsession of his books.

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The literary critic Stephen Greenblatt once wrote about Sendak’s books: “Love often takes the form of menace, and safe havens are reached, if they are reached at all, only after terrifying adventures.”

All his life Maurice bristled at the idea of childhood innocence and at those who thought his books were offending or challenging it. In a comic Art Spiegelman did in The New Yorker of a conversation they had in the woods, Maurice says: “People say, ‘Oh, Mr. Sendak. I wish I were in touch with my childhood self, like you!’ As if it were all quaint and succulent, like Peter Pan. Childhood is cannibals and psychotics vomiting in your mouth! … In reality, childhood is deep and rich … I remember my own childhood vividly … I knew terrible things … but I knew I mustn’t let adults know I knew … it would scare them.”

Maurice liked to tell the story of the daughter of a friend who was at school near the World Trade Center when the towers fell. She told her father that she saw butterflies on the building as the towers collapsed. Later she admitted that they weren’t butterflies, they were people jumping, but she didn’t want to upset her father by letting him know that she knew. Children protect their parents, which is the funny part of childhood that slips away from us, the awful knowledge it contains.

The received wisdom is that it is not good to scare kids, but Sendak’s belief was that kids are already scared, that what they crave is seeing their anxieties thrillingly laid out. Much of Sendak’s work, then, exists between play and terror, that infinitely intriguing, purely fantastical place where you are joked out of your most serious fears. But those fears are also entertained on the most serious and high level in Sendak’s books; they are not dismissed but reveled in, romped through.

After the runaway success of Where the Wild Things Are, Maurice ran into a friend from Lafayette High School. She was the girl he sat next to in art class. On his high-school yearbook page, which was captioned, “Your delightful drawings make us all gay. A famous artist you’ll be someday,” he had scrawled to her, “Lotsa luck to a swell gal. Sendak.”

Now she said to him, “How does it feel to be famous?” He said, “I still have to die.”

Maurice had a passion for ritual. He liked to eat the same breakfast every day—marmalade, English muffin, tea—from 9 to 11, then he would work, then get dressed and walk the dog, then have lunch, then work, then dinner with cake, and then, from about 10 to 2 in the morning, more work. The day was about creating a carapace for the work. In a letter to a reader with whom he warmly corresponded for decades, he once wrote that life was good when he was working or getting ready to work.

What is unsaid here is that life is not happy when he is not working. Like his mother and brother, Maurice had always wrangled with depression. The black moods would descend, and he would fight them off with work or, when he couldn’t work, with the idea of work. The work was, among other things, a mood stabilizer. It kept him going; it lured and cajoled him back to life.

Sendak often talked about his books as a “battleground” or “battles.” In the hours in his studio, under the cheap white lamp clipped to his drawing desk, he was fighting. The business of creating children’s books was not a sweet, civilized occupation; it was violent, bloody. He was defending or protecting himself.

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“I’m totally crazy, I know that,” he once said. “I don’t say that to be a smartass, but I know that that’s the very essence of what makes my work good.” The craziness was in his work. The blackness was vital; he called it “the shadows.” The shadows were in the illustrations. Without them, there would be only charm.

Those close to him sometimes heard the extremes of depression in his voice; he had more than a passing acquaintance with the edge. He smuggled moments of numbed depression into Higglety Pigglety Pop!—“The lion said, ‘Please eat me up. There is nothing more to life’”—and into My Brother’s Book.

Maurice wrote a letter in the mid-’70s about being in a funk in San Francisco. He is working on a book that he thinks may be his finest. This makes all the difference to his mood. He talks about the book as if it has entered the world to redeem him. He knows that the idea of art rescuing you is a cliché, but in this case, it’s really true. He’s going to make it because of the book.

This seems not an overstatement: The books and drawings and opera backdrops came to save him. Or he dreamed and labored to save himself.

“Please don’t go. We’ll eat you up, we love you so!” say the wild things to Max in one of Sendak’s most immortal lines. Love here is terrifying, consuming, exhilarating; it is infinitely recognizable, even to small children, annihilating, seductive. It’s the purest expression we have of the delirious violence of strong feeling. The British psychoanalyst Donald Winnicott once wrote that the mother must resist making love to or eating her child, which resonates because certain loves are so fierce and urgent, it feels as if you want to bite or eat or consume the object of that love.

Maurice said he dreamed up the idea of the wild things as an adult, at a shiva after someone had died, with his brother and sister. They were sitting around, laughing about their relatives from Europe. The relatives didn’t speak English. Their teeth were yellow. They grabbed the children’s cheeks. It was like they would gobble up Maurice and his siblings, along with everything else in the house. The wild things were Jewish relatives.

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In fact, Sendak’s books are filled with beasts that might eat you, often lions. There is the lion in Higglety Pigglety Pop!, a stately yet cryptic menace, who closes his jaws around Jennie’s head; there is the lion in the nutshell library, who swallows Pierre and then, after being hit on the head with a folding chair and shaken up and down by a doctor, spits him out again on the floor; there is the bear in My Brother’s Book, who bites the brother and kills him. The idea of being consumed by an animal is a code for death—that is, depending on the moment in Sendak’s life, either easily reversible or not. He is playing here with a very basic primal fear—being swallowed by a beast, a child’s fear—but it is also a fear of being consumed, obliterated; it is about the loss of self on the most grave and terrifying adult level. Can you be close to another person without being consumed?

He liked to say that when his sister gave him his first book, he bit it. This fits with his sensual apprehension of the universe, his physical devouring of people, places; he took things in more sensually than most—he hugged his friends, grabbed their noses, kissed them on the lips.

There is a moment in Where the Wild Things Are when Max gets lonely with the wild things, in his tent, in the great orange dusk, and wants to go where someone loves him best of all. For Max, that someone is his mother, who has made him a warm supper with a big slice of layer cake. She is one of the great reassuring presences of a mother in literature, but for Maurice, that person was never his mother. Did people love him best of all? He voraciously hungered to know that they did.

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Maurice liked to watch medical shows. He would be happy sitting at the dinner table, watching a graphic reality-TV surgery show while eating spaghetti. Someone sitting with him might wonder why he liked watching a human body ripped open, what he wanted to see.

On some level this could be seen as research, as Sendak belaboring a problem that obsessed him. He had always worked extraordinarily hard. He did more drafts, more dummy books, more tracings over light boxes, more fully realized drawings for his opera backdrops than he needed to, than other artists would, than necessity demanded; he labored toward the final version; he fought for it. His mastery of so many different styles and his vast strides in technical achievement are not a mystery: He worked insanely hard for them, and he was also working, in his own vivid way, on death.

Tony Kushner wrote about a conversation he had with Maurice:

I tell him I will visit him in Connecticut. “Great,” he says. “We can dance a kazatzkah!” “What kind of dance is that?” I ask. “A kazatzkah is the Dance of Death,” he tells me. “Sounds good. Do you know the steps?” I ask. “Do I know them,” he says with glee, making a kazatzkah sound like the most fun imaginable, “I know those steps in every notch, every noodle, every nerve cell! Of course I know them! I’ve been rehearsing them all my life!”

Sendak had collected a series of beloved objects that dealt with death: Mozart’s letter to his father telling him that his mother was dead. A Chagall funeral scene. A grief-struck letter he wrote at 16 to his future self on the day Franklin Delano Roosevelt died, full of lavish adolescent sorrow, railing against the people who just chattered and laughed as if nothing had happened. Wilhelm Grimm’s letter “Dear Mili,” to a child whose mother had died.

These objects were soaked in meaning for him. It was as if he had traveled somewhere and brought home souvenirs.

Maybe the most startling of these objects is Keats’s original death mask. Maurice did not keep the wooden box containing it in his bedroom but in the blue guest room. He liked to open it and stroke the smooth white forehead. He said it did not make him feel sad, it made him feel maternal.

Maurice drew his partner Eugene after he died, as he had drawn his family members when they were dying. The moment is one he was compelled to capture, pin down, understand, see. Where many— maybe most—people look away, he wanted to render. He was very wrapped up in the goodbye, the flight, the loss; it was almost Victorian, to be so deeply entranced with the moment of death, the instinct to preserve or document it. It’s also the artist’s impulse: to turn something terrible into art, to take something you are terrified of and heartbroken by and make it into something else. For the time it takes to draw what is in front of you, you are not helpless or a bystander or bereft: You are doing your job.

He wrote another beautiful letter to a reader in 1964. He tells the story of visiting an old family friend who was dying. He was very afraid of seeing her, afraid of how his parents would feel, and afraid of how he would feel. This was the last time he would see her. And yet when he did it was strangely lovely. It was like staring into something he had always been terrified of, and it was exquisite. He left feeling both miserable and elated.

This seems to be key: Staring into something you have always been terrified of and finding it beautiful.

Complete Article HERE!

‘The Good Death’: Hard to find, and religion’s role may be to blame

By 

There is no such thing as a “good death.” There is only a “good enough death.”

So writes Ann Neumann in “The Good Death: An Exploration of Dying in America.” A visiting scholar at the Center for Religion and Media at New York University and a hospice volunteer, Neumann takes a close-up look at end-of-life issues and how they are both helped and hindered by faith.

"The Good Death" by Ann Neumann.
“The Good Death” by Ann Neumann. Cover photo courtesy of Beacon Press

“Religion is most prevalent around the deathbed in our country,” Neumann, 47, said in a phone interview from her home in Brooklyn, N.Y. “That is where it is resoundingly proven that we are not a secular nation.”

“The laws, medical practices and corporate regulations that surround death and dying continue to be strongly influenced by religion, whether it is in the delivery of health care through Catholic hospitals, whether it is in the rituals that medical practice is infused with, or whether it is simply in the language that we find acceptable around the dying.”

If “The Good Death” is anything, it is a call for people to examine their own wishes around end-of-life issues and decide what role religion — either theirs or that of their caregivers — will play. Religion, she holds, influences our ideas of quality of life and how far we are willing to go to preserve it.

Neumann has spent time around the dying. Her first up-close experience as a caregiver was with her father’s difficult, drawn-out death from cancer that left her worn-out and overwrought.

In the aftermath, unmoored by her own grief and seeking a way to cope with the death she knew would someday come for her and her loved ones, she decided in 2007 to become a hospice volunteer. Her descriptions of her visits with her patients are among the most moving in the book.

In between she weaves in the history of death in America, from the front parlor to the back room of the nursing home. She chronicles the harrowing right-to-die cases of Karen Ann Quinlan, Nancy Cruzan, Terri Schiavo and Jahi McMath, who remains in a coma in New Jersey, the only state that does not consider her legally brain dead, Bible verses hanging over her bed.

Newmann, reared a Mennonite and now a Catholic, looks at how quality of life is often sacrificed for sanctity of life, often for religious reasons, by health care providers, families and religious leaders.

“We must examine the inequality and the discrimination that the church has built into its position on health care,” she said. “The Catholic Church is so good at managing hospitals, at addressing patient care that we cannot say it is bad on the whole and yet the discrimination against women, the lack of autonomy provided to elders or to individuals like to Terry Schiavo — these families that are put in these difficult positions should be supported by their church. They should be able to make their own decisions.”

Ann Neumann is a visiting scholar at the Center for Religion and Media at New York University, where she is a contributing editor to the Revealer. Her articles have appeared in the New York Times, Bookforum, the Nation, and Guernica. This is her first book.
Ann Neumann is a visiting scholar at the Center for Religion and Media at New York University, where she is a contributing editor to the Revealer. Her articles have appeared in the New York Times, Bookforum, the Nation, and Guernica. This is her first book.

But what about hope? In the book, Neumann echoes the writing of Adrienne Martin, a professor at the University of Pennsylvania, who writes that hope is not always a good thing. It can lead to pain and suffering, both physical and emotional, and result in stretching out an illness in the hope for an unlikely positive outcome.

“It was an area of research that fascinated me because it did question the hands-down understanding we have that hope is always good,” Neumann said. “Hope can be sustaining. It can get us out of bed. But it can also result in the very painful treatment of patients and lead to denial.”

What’s a country with a rapidly aging population to do? The U.S. Census Bureau predicts that by 2050, one in five Americans will be 65 or older and have diverse ideas about end-of-life issues. A Pew Forum survey in 2013 found two-thirds of Americans believe there are some situations in which patients should have a right to end their own lives, while 31 percent say doctors should do everything they can to prolong life.

Start conversations with your loved ones, make your end-of-life wishes clear and know your rights, Neumann said.

“A good death is whatever a patient wants,” Neumann said. “It is not up to me, to their legislators, to their priests, to their families. That is true informed consent. A good enough death is as close as we can get because humans are not perfect. We can get so much closer, but we will never have a perfect death.”

Complete Article HERE!