Tag: Conscious Living

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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!

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

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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!

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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!

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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!

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Sexuality – Breaking the Silence

By: Anne Katz PhD, RN, FAAN

sexinoldage

Sexuality is much more than having sex even though many people think only about sexual intercourse when they hear the word. Sexuality is sometimes equated with intimacy, but in reality, sexuality is just one way that we connect with a spouse or partner we love (the true meaning of intimacy). Our sexuality encompasses how we see ourselves as men and women, who we are attracted to emotionally and physically, what turns us on (eroticism), our thoughts and fantasies, and yes, also what we do when we are sexually active, either alone or with a partner. Our sexuality is connected to our image of ourselves and it changes over the years as we age and face threats from illness and disability and, eventually, the end of life.

Am I still a sexual being?

Illness can affect our sexuality in many different ways. The side effects of treatments for many diseases, including cancer, can cause fatigue. This is often identified as the number one obstacle to sexual activity. Other symptoms of illness such as pain can also affect our interest in being sexually active. But there are other perhaps more subtle issues that impact how we feel about ourselves and, in turn, our desire to be sexual with a partner or alone, or if we even see ourselves as sexual beings. Think about surgery that removes a part of the body that identifies us as female or male. Many women state that after breast cancer and removal of a breast (mastectomy), they no longer feel like a woman; this affects their willingness to appear naked in front of a partner. Medications taken to control advanced prostate cancer can decrease a man’s sexual desire. Men in this situation often forget to express their love for their partner in a physical way, no longer touching them, kissing them, or even holding hands. This loss of physical contact often results in two lonely people.  Humans have a basic need for touch; without that connection, we can end up feeling very lonely.

Just talk about it!

seniors_menCommunication lies at the heart of sexuality. Talk to your partner about what you are feeling, how you feel about your body, and what you want in terms of touch. Ask how you can meet your partner’s needs for touch and affection. The most important thing you can do is to express yourself in words. Non-verbal communication and not talking are open to misinterpretation and can lead to hurt feelings. Our sexuality changes with age and time and illness; we may not feel the same way about our bodies or our partner’s body that we did 20, 30 or more years ago. That does not mean we feel worse – with age comes acceptance for many of us – but we do need to let go of what was, and look at what is and what is possible.

The role of health care providers

Health care providers should be asking about changes to sexuality because of illness or treatment, but they often don’t. They may be reluctant to bring up what they see as a sensitive topic and think that if it’s important to the patient, then he or she will ask about it. This is not good. Patients often wait to see if their health care provider asks about something and if they don’t, they think that it’s not important. This results in a silence and leaves the impression that sexuality is a taboo topic.

Some health care providers are afraid that they won’t know the answer to a question about sexuality because nursing and medical schools don’t provide much in the way of education on this topic. And some health care providers appear to be too busy to talk about the more emotional aspects of living with illness. This is a great pity as sexuality is important to all of us – patients, partners, health care providers. It’s an important aspect of quality of life from adolescence to old age, in health and at the end of life when touch and love are so important.

Ask for a referral

If you want to talk about this, just do it! Tell your health care provider that you want to talk about changes in your body or your relationship or your sex life! Ask for a referral to a counselor or sexuality counselor or therapist or social worker. It may take a bit of work to get the help you need, but there is help.

Complete Article HERE!

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Right to die: Should ‘mature minors’ have access to doctor-assisted death?

MPs wrestle with sensitive moral and legal questions in crafting new physician-assisted death law

By Kathleen Harris

A woman holds the hand of her mother who is dying from cancer during her final hours at a palliative care hospital in Winnipeg in 2010. A woman holds the hand of her mother who is dying from cancer during her final hours at a palliative care hospital in Winnipeg in 2010.
A woman holds the hand of her mother who is dying from cancer during her final hours at a palliative care hospital in Winnipeg in 2010.
A woman holds the hand of her mother who is dying from cancer during her final hours at a palliative care hospital in Winnipeg in 2010.

This week’s parliamentary report on the right to die has put a profound moral and legal question to federal legislators: Should children suffering from incurable illness be allowed to end their own life with the help of a doctor?

Among the 21 recommendations from the joint panel of MPs and senators is one to allow “competent mature minors” to request a physician’s help to die.

The committee tabled its 70-page report Thursday called “Medical Assistance in Dying: A Patient-Centred Approach.” It suggests a two-phased approach, with an initial phase allowing doctor-assisted death to adults 18 years and older and then expanding it to mature minors within three years.

Dr. Derrick Smith, head of psychiatry at Vancouver’s Children’s Hospital and chair of the physicians’ advisory council of Dying with Dignity Canada, said it is right to determine the capacity and competence rather than the arbitrary age of someone making such a “momentous decision.”

Age is ‘arbitrary’

“Some people who are 21 do not have the capacity to consent and some people who are 14 do,” he said. “It’s really artificial to try and have an age as a cut-off point. You’re much better off going with something measurable like capacity to consent. If the cut-off is 18 and we’re prepared to let people 18 have physician-assisted death, why would we want to have 17-year-olds suffer interminably?”

The committee’s recommendation to include mature minors has generated much controversy, with critics insisting it goes far beyond the parameters set out by the landmark Supreme Court decision on Feb. 6, 2015, that struck down the ban on assisted death.

But Smith believes the discussion should go even further — to include young children.

“The committee isn’t going to address that, but as a society we should,” he said. “Obviously a five-year-old is not going to be able to give consent for something like that, but should we allow a substitute decision maker like the parent to say, “Johnny’s had enough suffering. I think it’s time that we assist him to terminate the suffering.”

Conservative MP Mike Cooper, who filed a dissenting report with three of his fellow caucus members, said including minors deviates from the “clear road map” set out by the Supreme Court. He called it “illogical” that someone not old enough to vote would be old enough to decide to die.

“What this does is open the door for someone under the age of 18 who may have an underlying mental health issue to be able to access doctor-assisted dying, and I don’t think anyone would think that’s a good thing,” he said.

To date, Belgium and the Netherlands are the only two countries that allow minors to obtain medical assistance in death. There is little research or data on how it has worked so far, and Cooper said Canada is heading in a dangerous direction.

Uncharted territory

“I think there are risks when you’re talking about minors; about their ability to have capacity, a full appreciation of the consequences,” he said. “Most jurisdictions have not gone down this road, and I think from a policy standpoint we’re entering uncharted territory and we should proceed with a great deal of caution.”

Liberal MP Rob Oliphant, who co-chaired the committee on medical assistance in death, said the Supreme Court decision was based on two adults with physical conditions, but the report “hugs closely” to charter rights of all Canadians, including minors and the mentally ill.

“What other issues could come up and should be in the legislation to ensure that Canadians’ rights are protected in the spirit of the charter, in the spirit of the decision?” he said. “We looked at how age could be a charter issue, ability could be a charter issue, capacity could be a charter issue.”

While the issue has drawn bitter political battle lines, it is also dividing Canada’s medical community.

Dr. Dawn Davies, medical director of the palliative care program at Stollery Children’s Hospital in Edmonton and chair of the Canadian Paediatric Society’s bioethics committee, believes the panel should have stuck to consenting, competent adults. She said it’s “premature” to set a three-year deadline to include minors.

In most cases, palliative care can mitigate and manage the pain and suffering of patients, yet she is one of fewer than 20 full-time pediatric palliative care physicians across the country.

“Until we can improve that, I have very grave concerns, because I think a lot of adults are asking for assisted death out of a sense of control … but I think in the case of children, we don’t even know what their issues are.”

Court challenges expected

Davies expects that requests from minors could wind up in court with challenges from medical professionals, child protection services or even relatives.

She could not predict how many minors would actually seek medical assistance to end their own lives, but in her experience most terminally ill patients want to live to reach milestones such as birthdays or graduation.

But she worries about young people who may have devastating injuries, like quadriplegics whose life-altering experience causes despair.

“In many cases, people do go on to live productive, fulfilling lives, and I really worry about new catastrophic injuries for minors — that possibly leading to requests,” she said.

Davies said with advancements in pain management and end-of-life care, the issue is less about preventing pain and suffering and more about control over ending one’s own life. She calls that a “real departure” for human beings.

“For myself, I’d say it goes beyond being a physician. It is such an about-face for our whole society that one person will be able to take the life of another person for any reason,” she said. “I just don’t think personally that I would ever be comfortable with that.”

The Liberal government has until June 6 to pass new legislation on doctor assisted death.

Complete Article HERE!

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Video Game Review: ‘That Dragon, Cancer’

A couple built a game inspired by the life and loss of their young son. I’m a bereaved father who played it. Here’s my experience.

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Around the time Amy and Ryan Green’s third child, Joel, turned one, he was found to have AT/RT, an aggressive pediatric cancer of the central nervous system. Surgery, radiation, and aggressive chemotherapy were employed, but another tumor emerged anyway. Initially given four months to live, Joel lived another four years, until the cancer finally killed him in March 2014.

Ryan is a video game developer, and Amy is a freelance writer. Their desire to memorialize their son led them to take a groundbreaking step: to create a video game about Joel’s life and death, and their experience of living through that process. The result, That Dragon, Cancer, was released for Macintosh, PC, and the Ouya console on January 12th, 2016, with a Linux version coming soon.

First, disclosures. I was an early backer of That Dragon, Cancer on Kickstarter, and backed it at a level that allowed me to place artwork by my daughters Carolyn and Rebecca into the game. Furthermore, my daughter Rebecca died of brain cancer on her sixth birthday in June 2014. So the topic is very close to me personally.

That Dragon, Cancer isn’t a game, by most definitions of that term. There are no structural barriers to advancing, no opposing forces to overcome, no points to score nor prizes to unlock, and no way to influence the outcome. The only choices you can make are how much of the content to experience, and how quickly you move through the storyline. It is, to my eyes, much closer to a movie than a traditional game, but the control the player exerts over pacing and discovery makes it far more engaging and affecting than any movie I’ve ever seen.

In the end, That Dragon, Cancer is something for which we don’t have a convenient term. It’s a window into other lives that says far more in its two hours than most other forms of media could manage in four, and might even have created a new genre of video games combining that personal window with a console. For the sake of convenience, I’ll continue to refer to it as a “game” and those who experience it as “players,” but I wish I had more honest words to use in their place.

As for a review, it’s difficult to discuss without lessening the impact of the game. I initially debated whether to explain the backstory but eventually came to realize that – just like in a movie one watches repeatedly over the years – knowing how the story ends actually heightens, not lessens, the game’s effect. Your heart breaks for the Greens even as their hearts do not break, in their moments of unknowing hope. Then, when the hopes go unfulfilled, your heart breaks anew.

The game presents itself in a heavily stylized 3D, with human figures looking almost like cartoons of rough carvings, and lacking facial features (other than eyeglasses on a couple of characters), a technique that makes the entire experience curiously more intimate. The constantly shifting viewpoint allows the player to be both observer and participant, evoking the feelings of being both a close confidant to the Greens and of taking their places. Most of the dialogue comes from Amy and Ryan, in their own voices. The spare soundtrack shifts effortlessly between from one mood to another, always illuminating the moment without overwhelming it.

The music, like the dialogue and the scenes we’re presented, can only be described as honest—not in the sense of accurate in the details, but of being fundamentally truthful. What’s remarkable is how clear-eyed the Greens are in every aspect of the journey. Even their anger, disgust, and envy—with each other, with themselves, with the world—are all presented without varnish, but also with judgment. As difficult as it must have been for the Greens to be so open, it must have been doubly hard to avoid excusing or condemning themselves.

So, too, are the Greens very honest about their faith in, and doubts about, God. A fair portion of the game presents their hopes that God will heal where medicine could not, as well as their growing fear that Joel will not survive. The two threads entwine and comment on each other as the game moves into its final levels. What astonished me was how That Dragon, Cancer presents these questions of faith with such clarity and neutrality that you can legitimately see this aspect of the game as either a powerful affirmation of the power of faith, or as a scathing indictment of the futility of faith, based solely on the Greens’ words and how they are presented.

This is but one of the many levels on which the game operates. It challenges you to endure the immediate events of the story even as it provokes intense reflection on what we believe and how we believe it. The game leverages its medium brilliantly, using common game mechanics to comment on the nature of the Greens’ challenges, and employing artful design to weave disparate emotions together—sometimes with great subtlety, and other times quite jarringly. There are radical, unannounced shifts in time and perspective, in which thoughts and scenes jump across hours or years. It’s an astonishingly accurate portrayal of how stress, fear, and grief disrupt the sense of linear time, both in the moment and when looking back in memory.

I’ve asked other players of That Dragon, Cancer about their experience in playing the game, few if any of whom have been through similar experiences in real life. I found that most of them had to take a break from playing the game partway through, and all of them took their break on the same level of the game—the level that was, according to Ryan, the nucleus of the entire game; and those who didn’t take a break said that level was the point where they almost did.

This is a gift that the Greens have given, possibly unintentionally, to those who play That Dragon, Cancer. Because as you go through this journey with the Greens, you always have the final say on whether things will progress or not. You can walk away from the game and do something else, secure in the knowledge that nothing is happening. You can stop short of Joel’s death, if you must. That’s the real benefit of being a game player: you can make that choice. You can decide to pause for a while, to reflect on what you’ve felt and regather your emotional reserves, while time does not progress and Joel gets no closer to dying. Families like the Greens, or like mine, didn’t have the luxury of a pause button.

It’s understandable if a reader’s first reaction is that playing the game sounds scary. I was honestly terrified as I started That Dragon, Cancer for the first time, not sure if I’d be able to get through it in one piece. But I was glad I’d played. It wasn’t easy. There were moments that shortened my breath and made my throat ache with sorrow. Parts of the story are legitimately harrowing—but other parts are peaceful, contemplative, thought-provoking, even joyful. Some moments are all of those things, and more, all at once. For me, the game became a prism through which to examine my grief and my relationship to it, refracted through the Greens and their story, and I was profoundly touched by it.

That Dragon, Cancer is an astonishing look at how one family dealt with the most piercing questions of life and death. It’s a difficult journey for anyone to take, whether or not they have suffered loss, but it’s an astonishingly complex and human work of art that I was honored and grateful to be able to take with the Greens. The thoughts and emotions I experienced while playing That Dragon, Cancer still linger with me, and I expect they will for a long time. If you’re ready for a video game to make you smile and weep and smile as you weep, to show you a family’s life with unflinching honesty and a complete lack of sentimentality in the face of some of life’s most difficult passages, I cannot recommend it highly enough.

Complete Article HERE!