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.

* * *

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!

Preparing to die well

By Karen Dandurant

Preparing to die well

Some day, every one of us is going to die, so why is that topic so difficult for most people to talk about?

A book, “Being Mortal,” written by Dr. Atul Gawande, explores that question. A new PBS documentary, based on the book, follows patients as they go through the process of dying, with a close look at the interactions between the patients, their family members and the medical community.

“Putting this into a movie lets people see what end-of-life care can mean,” said Dr. Keenan Al-Hojerry, one of the physicians depicted in the film. “Doctors look at death as a failure, but really, it is a part of living. As physicians, we are trained not to recognize that, but we must, to be fair to everyone involved.”

The staff of Portsmouth Regional Hospital will tackle these difficult questions and emotions in a three-part speaker series set for the spring. All lectures are free and will be held at the hospital from 7 to 8:30 p.m., in the hospital classrooms at 333 Borthwick Ave.

On April 18, Being Mortal will be the first topic. Presented by Cristina Hepburn of Beacon Hospice, the program is intended to help clarify issues surrounding quality of life and death for patients, family and physicians.

On May 10, the series continues as Dr. Sarah MacDuffie presents a talk about Advance Care Planning, with the focus on ways to have this much-needed conversation.

Finally, on June 2, “Healing Through Grief and Forgiveness” will help with final resolution of what can be a complicated relationship when the topic of impending death is involved.

Most of us probably think we know how we would prefer to die. Dying peacefully at home in our bed is a common goal. The questions that needs to be asked are when does quality of life become the deciding factor? When is it time to say enough when it comes to continuing treatment past the point of effectiveness or the possibility of a cure? When is it appropriate to have the conversation, and with whom?

I would argue that any time is the right time,” said Dr. Sarah MacDuffie, medical director of Palliative Care at PRH, and medical director at the Edgewood Centre in Portsmouth. “I think the more discussions with family about your values and your wishes, the better prepared they will be if the time comes when you cannot choose for yourself. And do it now. Waiting until there is a significant illness changes things and makes the conversation harder.”

If the conversation is not had early and often, MacDuffie said it can become the elephant in the room during a health crisis.

“The patient doesn’t want to discuss it because they don’t want their family to think they are giving up,” MacDuffie said. “The family doesn’t want to talk about it because they don’t want the patient to think they are giving up on them. So everyone should have the conversation often. Do advance directives, but that can’t be the end of the talking.”

Tracy Searing, a licensed social worker at Rockingham Visiting Nurse Association and Hospice, an affiliate of Exeter Hospital, said statistics show that only about 30 percent of people coming into hospice care have advance directives in place.

“As social workers, we start taking care of that from day one,” Searing said. “Most of the time patients do not realize how simple it is. I tell them I can have this in place in five minutes. Our goal for hospice patients is to have an advance directive the day of admission so we can be sure to honor the patient’s wishes.”

Searing said her family already has advance directives, even her adult children.

“I do not want to have this discussion when the question between my husband and I is whether or not to put my 18-year-old on a feeding tube or a ventilator,” said Searing.

Before 2014, Searing said there was no legal component in place to allow a family member to speak for another who could not speak for themselves.

“It would end up in court,” said Searing. “If there was no family agreement, the court system made the decision and that is not right. Now, a surrogate can be appointed to carry out the wishes.”

Preparing to be mortal is a two-part process.

MacDuffie said the person must be clear in his or her own thought processes about what they want to happen. Second is addressing the beliefs of the physician.

“I had one doctor tell me that death is the enemy, meaning we had to do everything, offer everything to keep death at bay,” MacDuffie said. “We need to offer one more test, one more treatment. I have watched this person’s thoughts change. We need to ask the question of whether or not this new intervention makes things better for the patient. Physicians need to get that we are going to die and that sometimes that is the best answer.”

“It completely goes against all of our training,” said Dr. Keenan Al-Hojerry. “This is very difficult for doctors. We are not taught to deal with death, so we don’t. We don’t know how to deal with the patient who is dying.”

Al-Hojerry said doctors struggle. He said life and death are like a moving stairway and it’s important to let everyone have a smooth ride no matter where they are along their path.

“Do we hold their hand, look them in the eye,” he said. “We tend to pick the least painful approach but may not be doing the best we can for our patient that way. Most patients, faced with death, know it on some interior level. They need a passionate caregiver who will not let them go through this alone.”

“The same goes for family members,” MacDuffie said. “We need to be able to tell them that we can try something, but it will not make a negligible difference, so they can decide if there is worth, if it is what their family member would want.”

And while most of us have an ideal vision of how we would like to die (peacefully, at home), we don’t give much thought about how to achieve that. Sadly, we aren’t well-informed of our options at end of life, and, if our wishes aren’t solidified in writing, our loved ones bear the burden of making crisis-driven decisions about our end-of-life care. As a result, many of us will experience medical interventions that in the end will not prevent our death and can make the process more difficult.

Instead, Dr. Al-Hojerry recommends paying attention to the setting: pull up a chair beside the bed, lower the bed railing, and have a conversation at eye level with the patient.

“Some patients respond well to a light touch – putting your hand on their arm or holding their hand can help them feel grounded when hearing frightening news,” he said. “Don’t be afraid of silence. People need time to process, and may ask repetitive questions. Give them time. It may be a few days before they feel able to ask questions. Know that they will likely experience the grief cycle of denial, anger, bargaining and depression before they come to acceptance.”

We can’t stop death, nor according to the laws in most states, can we help it move forward faster.

“You only die once,” Al-Hojerry said. “You had better do it right. That means being prepared to have a good death, so when it comes, you are ready.”

Complete Article HERE!

Dying Better, Even If It Means Sooner

Delaying death with excessive, expensive end-of-life care often does more harm than good.

Focus on the simple things, not extraordinary measures
Focus on the simple things, not extraordinary measures

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Life expectancy in the United States has increased by 30 years in the last century. Despite our longer lives, many Americans continue to fight death’s inevitability in ways that are costly socially, economically and spiritually. Our over-reliance on medical “miracles” is causing us to throw more and more money at the final year of life rather than grapple with the difficult – but ultimately more gratifying – work of approaching death more willfully by removing the sense of crisis and making the most of the moments that remain.

Defying and delaying death often remains the focus of many care providers even when patients reach their 80s, 90s and 100s. These individual decisions add up to the single greatest expenditure in the national health system: Care in the last 12 months of life accounts for over 25 percent of total expenditures for both Medicare and Medicaid. And while some studies have argued for cost savingsassociated with hospice care, others show cost neutral effects of engaging hospice in the last months of life, depending on how cost is measured and over what period of life. Meanwhile, a number of states are passing aid-in-dying laws, which will have moral, social and economic impacts, but the bills are simply directed at ending suffering; the changes in dying made possible by such laws (notably in Oregon) have not been the subject of economic analysis to date.

In short, driving down end-of-life costs will be slow because these costs are sustained by medical practice and patient choice, both social and behavioral practices subject to slow change. While this level of spending is unsustainable, there are greater costs – constantly fighting against death’s inevitability is also deeply unsatisfying.

Looking back, many sons and daughters I have worked with regret having encouraged a parent to undergo a hip surgery. Spouses regret pushing for their loved ones to be intubated, and many patients struggle to balance the suffering with the life-prolonging effects of their treatments. Such regrets are the outgrowth of an approach to death that is focused on delaying death rather than being present and accompanying loved ones as they are dying. Accessing death-delaying treatments often comes at the expense of easing discomfort and being intentional about the nonmedical ways we can help our dying loved ones.

End-of-life laborers are very clear about limiting the extraordinary measures some of their patients allow in their own lives. Their plans, shaped by their work with the dying, give clear direction about how they want to live: deliberately and without much medical intervention as they encounter illness and disease later in life. They sometimes mourn the life-extending measures that can prolong life at a very low quality and instead encourage loved ones to be present as often as possible, continue routines, tell stories, touch our dying loved ones and find ways to meaningfully connect, like looking at photos, being together in nature, listening to music or sharing a favorite food.

Although our medical advances are partially responsible for our longer years, when we begin parting with life, many end-of-life laborers remind us to focus on the mundane, not the extraordinary. They encourage family members and patients themselves to pause before pursuing treatments, to be as deliberate and purposeful about planning as possible and to enjoy those things that have always delighted or engaged them for as long as possible.

The friends and family members who are most proud of how they helped their loved ones often talk about little tokens: a friend clipped part of a favorite flower so her friend could smell her yard one more time; a daughter got the quilting club to gather in the hospice room; a son dug up a favorite book and read and read and read until he was certain his dad could no longer hear his voice.

Obviously families who seek life-prolonging measures do so for more moments with their loved ones. Unfortunately, aggressively delaying death often becomes the focus of the final weeks and days. Pursuing significant medical care often distances us from our loved ones: time spent in waiting rooms, surgical units and follow-up appointments, rather than watching the geese take off over a lake, taking that final trip to one’s homeland or reconnecting with friends who have been distant.

As more of us live longer and die slower, the challenge for many Americans will be to avoid rushing toward solutions and to live, sometimes quietly and uncomfortably, in the shadow of death’s certainty. End-of-life experts have taught me that recognizing limits might save us from some of the real damage we do to each other – asking our elders to fight on too long, to endure too many procedures and tests and surgeries and to spend too much time in the hospital instead of at home or in the garden – or holding the hand of someone who loves them.

Complete Article HERE!