Tag: Death And Dying

Posted on

Funeral Flower Terminology

File under:  Funeral Fun Facts

Funeral Flower Terminology

Sending sympathy flowers to a family in mourning is a great way to show your support and contribute to the funeral arrangements. However, it can be difficult to know what kind of funeral flowers to send or what each type of bouquet entails.

This quick guide to funeral flower terms and options should help give you a clearer understanding of what kind of choices are out there—and what funeral flower etiquette dictates you should do.

  • Arrangement: The arrangement is what shape and style the funeral flowers will be delivered in. Some of the options include basket arrangements, vase arrangements, wreath arrangements, cross arrangements, and pedestal arrangements, just to name a few.
  • Blooming Plant: If you want to send something that will last longer than cut flowers, a blooming plant is a good choice. These potted plants come with a bright floral bloom.
  • Casket Blanket: This “blanket” of flowers is draped over the casket to provide a visually stunning effect.
  • Casket Scarf: Instead of an entire blanket, some families choose to decorate a casket with a smaller scarf of flowers that can be artfully arranged.
  • Easel: If a wreath or cross arrangement of funeral flowers will be on display, you may need a frame to hold it up and provide a visual centerpiece. These can be rented or provided by most funeral homes.
  • Filler: Most flower arrangements are made up of several large and beautiful flowers, surrounded by what is known as “filler.” Ferns, fronds, baby’s breath, and other less expensive items help to make the arrangement look nice and full without making it too costly.
  • Flower Bearer: As the name suggests, this individual is similar to ring bearer/flower girl in a wedding, and walks before or after the casket carrying flower tributes.
  • Flower Car: A special vehicle may be needed to transport the flowers to the cemetery or funeral home for a secondary service.
  • Grave Blanket: This display can be made of flowers, ribbons, greens, and other floral fillers to cover a newly laid grave. It is meant to be temporary.
  • In Lieu of Donation: Some families would prefer not to receive funeral flowers, and ask instead that you make a donation to a charity or other organization instead.
  • Potted Plant: Not all funeral flowers have to be floral in design. Many families prefer the lush greenery of potted plants, which can be blooming or made up of ferns and other non-floral designs.
  • Spray: The most common type of funeral flower, a casket spray is an arrangement of florals and leafy greens that is designed to be displayed on the top of a closed casket.

For a more detailed list of what types of funeral flowers are available and what is appropriate to send to the family, you may want to contact a florist directly. Most of them have considerable experience working with funeral displays and will be able to direct you toward the best options for your relationship to the family and your budget.

Complete Article HERE!

Posted on

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.

By <

003

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!

Posted on

On death and dying at home

By Pat Webdale

Pat Webdale

On display at the Dutton House in the Shelburne Museum in Vermont is a wooden cradle several feet long. A thin blanket covers the bottom.

The cradle that sits in front of the fireplace was used to keep elderly persons who were close to their demise warm and comfortable near their family. It was once a common practice when most ill and elderly persons died at home.

It also reminds me of my own grandmother.

Several people died in my grandmother’s home. I witnessed my Grandma Gert as the caretaker of her mother, my great-grandmother. I remember watching my grandma and her daughter, Aunt Helen, helping the older woman to the bathroom. There were no bedside commodes delivered by hospice yet. Each woman held great-grandmother under one arm. She was 87 years old. We would give her sips of water and hugs and fix her pillows. She died peacefully at her daughter’s home.

Grandpa Mike was the next recipient of Gert’s loving care. My dad would come over to help him walk around the living room to keep his skin free from irritation. I was present in the house when Grandpa died. Grandma herself was not so fortunate as to die in her home. After breaking two bones and becoming incapacitated, she died in a nursing home. I did get to visit my maternal and paternal grandmothers in their respective nursing homes.

Thirty years later, my mother-in-law, suffering from terminal cancer at age 72, was able to stay in her own home until the end of her life. She had the companionship of her sister until a week before she died, when she went to a hospice house for respite. One night I had the privilege to stay overnight and care for her in her hospice room. When the next day dawned, it was Mother’s Day. All of the family gathered for a party in the common room. We gave her gifts and enjoyed dinner. Mom died two days later.

A decade later, my father, 85, needed acute care. The family gathered to talk about putting him in a nursing home. We decided to first have a visit with a hospice volunteer. I sat in the living room with my dad and wished out loud that he would die peaceably, and not languish for many days. At that very moment he took a last breath. He was able to pass away with his oldest daughter, me, close to him.

My own mom always said she did not want to go into a nursing home. It is amazing that she was able to fulfill this wish. She lived on her own for 11 years after my father died. Her home was a few doors away from my sister, who was mom’s baby. Susan took extraordinary care of our mom. She drove her to the senior center and took her to the library and grocery shopping. I am sure this TLC is why mom lived so long. At the age of 91, my mother suffered a heart attack and we did call 911. She went into a hospital and put up with various tests and X-rays. I stayed overnight with her for the duration of the stay. The staff told us that she was not going to rally and recover, as pneumonia had set in. An ambulance returned her to her beloved home. Again we called on hospice. She left the easy chair she was sitting in and went to bed, her mind made up. Her four children were with her almost constantly. A few grandkids came to visit; one was a nurse who took her final vitals. I was the kid who gave her the morphine. My sister is the one who heard her last breath as I slept in another room.

I think about that cradle once in a while. Maybe when my time comes, I can prevail on my son-in-law to build one for me. I will snuggle in with my Pottery Barn faux fur blanket. Maybe I can still ask for a glass of Cabernet. That would be nice.

Complete Article HERE!

Posted on

What the words of a dying doctor taught me about life’s meaning

BY REBECCA RUIZ

when-breath-becomes-air

When I learned of the late Paul Kalanithi’s memoir When Breath Becomes Air, which published earlier this year, I felt drawn to its premise. A young doctor with great ambition receives a terminal cancer diagnosis and reports back from the twilight of his life on his quest to seek and find meaning.

Feeling unsure of my own purpose in life, I wanted Kalanithi’s journey to become a beacon to guide my own wandering. Perhaps, I hoped, he might be some kind of oracle.

But that is not the design of Kalanithi’s gripping, emotional book. You, dear reader, are not meant to passively observe Kalanithi’s final moments, glean his wisdom and walk away feeling assured in your path.

Instead you will bear witness to his yearning, suffering and grace. You will watch as lung cancer annihilates his dreams of becoming a renowned neurosurgeon and doctor-philosopher. You will ask yourself if you’ve ever worked as hard as Kalanithi, who commits himself to relentless hours as a medical resident performing high-stake surgeries — even as he tries to dodge death.

As unbearable as that sounds, the pull of this narrative is magnetic. More than a year into parenthood, I hadn’t finished a single book — yet I could barely put down When Breath Becomes Air. Almost nothing else felt as important.

That the book demands your presence is a credit to Kalanithi’s captivating prose. Whether he is describing in vivid detail a midnight hike in the Eldorado National Forest (“pitch-black, stars in full glimmer, the full moon still pinned in the sky”) or his desire to bridge the worlds of literature and neurosurgery (“I had come to see language as an almost supernatural force”), Kalanithi’s sentences are both urgent and poetic.

Others in a similar position might be tempted to sanitize their life. Here’s a man who is candid about his marital troubles. He confesses that he finds himself drifting into becoming a doctor who just goes through the motions:

All my occasions of failed empathy came rushing back to me: the times I had pushed discharge over patient worries, ignored patients’ pain when other demands pressed. The people whose suffering I saw, noted, and neatly packaged into various diagnoses, the significance of which I failed to recognize — they all returned, vengeful, angry and inexorable.

Kalanithi even admits that he suspected cancer months prior to the official diagnosis. His account would have been richer with an exploration of why he dismissed those prescient instincts, but the reader can’t fault a man who has so little time for self-examination.

When Breath Becomes Air is an imperfect book, but it draws its power and permanency from those limitations.

Kalanithi died before finishing the memoir in March 2015, at age 37. His final passage is a moving dedication to his infant daughter (and is followed by an explanatory epilogue from his wife). But before he writes those tender words, he leaves the reader with a gift of their own:

Everyone succumbs to finitude. I suspect I am not the only one who reaches this pluperfect stage. Most ambitions are either achieved or abandoned; either way, they belong to the past. The future, instead of the ladder toward the goals of life, flattens out into a perpetual present. Money, status, all the vanities the preacher of Ecclesiastes described hold so little interest: a chasing after wind, indeed.

Kalanithi makes no attempt at reassurance. The end is not tidy or filled with comforting platitudes. He makes no effort to find a reason in his death. I had read every page with anticipation, waiting for Kalanithi to share adages born of introspection and tragedy, I had missed the point all together.

Kalanithi’s wisdom lay in wrestling with the toughest questions humans can ask of themselves, even if they go unanswered. That bravery, standing at the edge of the abyss with fortitude, is what gives us meaning. And it’s what made Kalanithi a courageous doctor and human being.

When Breath Becomes Air is essential reading in a world where we try so hard to exercise control over the unpredictable. While the miracles of science and technology are worthy of our praise, we lose something vital when we forsake ambiguity for certainty.

Kalanithi understood that we learn who we are when we remain still in moments of confusion and crisis, when we pause to ask the terrifying questions. And then we keep moving forward even when it feels impossible.

“I began to realize that coming face to face with my own mortality, in a sense, had changed nothing and everything,” Kalanithi wrote. “Seven words from Samuel Beckett began to repeat in my head: ‘I can’t go on. I’ll go on.’”

Complete Article HERE!

Posted on

What Dying Looks Like in America’s Prisons

In many places, inmates who want to go into hospice care have to sign a do-not-resuscitate order first.

By ANN NEUMANN

Members of the media walk down the corridor inside the Adjustment Center during a media tour of California's Death Row at San Quentin State Prison in San Quentin, California December 29, 2015. America's most populous state, which has not carried out an execution in a decade, begins 2016 at a pivotal juncture, as legal developments hasten the march toward resuming executions, while opponents seek to end the death penalty at the ballot box.
Members of the media walk down the corridor inside the Adjustment Center during a media tour of California’s Death Row at San Quentin State Prison in San Quentin, California December 29, 2015. America’s most populous state, which has not carried out an execution in a decade, begins 2016 at a pivotal juncture, as legal developments hasten the march toward resuming executions, while opponents seek to end the death penalty at the ballot box.

I drove the four and a half hours to Rome, New York, the night before I was scheduled to visit the prison hospice program at Mohawk. The desk clerk at the Quality Inn gave me directions the next morning. “You can’t miss it,” she said in a raspy voice. Mohawk had once been a residential home for the developmentally disabled. It occupied the southernmost corner of the 150-acre Mohawk-Oneida campus and was converted to a medium-security prison in 1988. Today, it houses about 1,400 inmates, 112 of whom are inside the “skilled nursing facility,” Walsh Regional Medical Unit, which takes in prisoners from the central and western parts of New York State.What the hospice program at Mohawk did was prevent patients from dying alone. Terminal patients, particularly those dying inside prison, need human contact, companionship, and a chance to talk about their lives, the nurses told me. The program also provided healthy prisoners who had good behavior records the chance to train as volunteers, to give back to their fellow inmates. The program provided a real “sense of satisfaction to our guys,” according to the daytime hospice nurse. “They’re proud of what they’re doing. They’re putting someone ahead of themselves. They’ve put themselves first until now.” Volunteer training took place once a year (and lasted one week), but applications came in throughout the year.

The nurse called the patients in Walsh “my patients” with a kind of endearment that expressed her commitment to them and the program. Among them, 11 were dying of AIDS and seven had major illnesses, like cancer. Special accommodations were made for dying patients—like private rooms with TVs and radios and special meals—but the staff was prepared  for the “traps” that such accommodations could bring: trading morphine for cigarettes, being alone with female staff. The program, I was told, accepted patients with six months or less to live, although some live longer. “They have the chance to get involved with their own feelings,” one of the nurses said.Because of my time spent as a hospice volunteer, the tone these staff members used caught my attention. They were proud of the jobs they were doing; they felt they were contributing to the betterment of society. They found their work rewarding and fulfilling. I was in awe of them even as I balked at the paternalistic role they played in helping these prisoners—caged, monitored, “employed,” removed from the world—to  “give back.” The concept of rehabilitation may haunt any conversation about incarceration, but the extent to which anyone believes in it gets lost in the practices of policing, sentencing, and incarcerating. It’s easy to suspect that this is in part because of the power dynamic involved. Prisoners are subjected to a particular role inside, one that punishes them for any kind of deviation. They are constantly subject to an unbending authority. When prisoners go into hospice, either as patients or as volunteers, the rhetoric that surrounds their roles is constantly infused with ideas of reform.

001

Walsh, it seemed, was replicating the hospice model, now decades old, inside its walls. And the old hospice directive—that patients should be helped to think reflectively and reckon with how they’ve lived their lives—fits surprisingly well in prison. It dovetails with the belief that men were incarcerated because they had not taken responsibility for themselves, because they did not understand compassion, did not follow the rules, and did not make themselves productive and useful members of society. Hospice is a way for them to find forgiveness for their sins and to make peace with their world and themselves.

Since prisons were established in the United States, there have always been prisoners dying inside, but the recent rise in the age of the prison population and the need for prison administrators to find ways to care for the elderly, sick, and dying provided them with a new opportunity for rehabilitation: care for the dying. What better way to help a prisoner face his sins than turn his face toward death?There are 2.3 million adults in jail or prison in the United States. That’s the largest number of incarcerated people in the world. Between 1995 and 2010, the number of prisoners over 55 quadrupled.  By 2030, they will account for an estimated one-third of all incarcerated people, according to a 2014 report, The High Cost  of  Low  Risk: The Crisis  of America’s Aging Prison Population, by the Osborne Association, a prison advocacy group based in New York. Behind prison walls, where every social malady is compounded, is the perfect place from which to consider the future of health-care access and end-of-life care in the United States.

According to the National Hospice and Palliative Care Organization’s 2012 report, End of Life Care in Corrections, there were more than 75 hospice programs in U.S. prisons in 2012. Fifty percent of them rely on inmates as volunteers. A 2011 paper by Katie Stone, Irena Papadopoulos, and Daniel Kelly in Palliative Medicine suggests that the benefit for inmate volunteers is that “they are able to offer patients a level of empathy that cannot be achieved by free people regardless of intention or training.” Inmate volunteers know what it’s like to be a prisoner and can better share experiences and understanding with incarcerated hospice patients. The paper suggests that volunteers “gain valuable psychological rehabilitation”  through  a “renewed sense of responsibility and care.”

002

But such programs, according to the study, have two primary challenges: pain and trust. Pain management in a facility where drug use is rampant—and, indeed, a major cause of incarceration—is problematic. Doctors and nurses can find it hard to believe a patient who tells them he’s in pain. “A culture of suspicion emerged concerning the illicit drug trafficking of narcotics intended for pain relief,” the Palliative Medicine report states. The “macho” prison culture also prevented many in pain from admitting what they felt. But a larger issue, one difficult to measure, exists: “Prison healthcare staff may believe that prisoners deserve their suffering.” In other words, pain is punishment. Staff members tend to default on the side of pain over more medication when prescribing narcotics to hospice patients. In church parlance and even in broader society, the belief that pain makes us better people is commonplace. In prison, suffering is part of the centuries-old plan.It’s also hard for prisoners to believe that staff members have their best interests in mind. Can you trust doctors who work for a system that controls every aspect of your life? A system that was established to punish, subjugate, discipline, restrain, subdue? Decisions to limit care (or not pursue every option) can make prisoners even more distrustful of their caregivers. Couple that with the requirement that, in 55 percent of prisons, patients must sign DNR orders before they can enter hospice, and a climate of deprivation, ill will, and doubt about the facility’s objectives  can grow. Patient safety is tempered with a paternal “we know what’s good for you” attitude; prisoners who feel their lives are less valued think the system doesn’t care about them or is invested in getting rid of them. Yet sending prisoners to external hospices, as is done in the United Kingdom, or releasing those who are too ill to violate laws, is also a problem. The saddest sentence of the Palliative Medicine report is: “For some, the prison and its inhabitants  are all that is familiar due to institutionalization.”

“The challenge is that we can’t lose compassion or cross a line,” a nurse told me, her tone warm and professional.It’s just one of the many health challenges unique to prison populations. Prisoners age faster than those of us outside. “Incarceration not only compounds existing health issues and heightens the risk of further health problems,” states the Osborne Association’s 2014 paper, “but—most alarmingly—has a deteriorating effect on the bodies of incarcerated people.” Incarceration may slow down a prisoner’s perception of time, but it accelerates his body’s. Incarceration takes more years out of a life than just those required by a sentence. Lack of proper mental and physical health care and abnormally high levels of stress and anxiety can make fifty-year-old prisoners’ bodies seem 10 to 15 years older. Of prisoners over 50, 40, to 60 percent have mental-health challenges.

003

Prisons weren’t designed for elders, either. They require that prisoners climb into bunks and haul themselves up stairs or across long distances. Meals must be eaten in 12 minutes. Daily routines are strictly timed and regimented; one error—due to dementia, disorientation, physical inability, or pain—and punishment is delivered. The physical discipline of prison, meant to rehabilitate the weak, evil, or selfish mind of a criminal, is a questionable approach to reform, at best. For an elderly population, it looks like abuse. But renovating America’s prisons to meet the needs of an aging population isn’t in the budget. Dealing with the needs of prison elders will take a variety of approaches, none of which look easy.The costs of prison health care are, like the costs of public health care, rapidly increasing. The United States currently spends about $16 billion—more than the entire Department of Energy budget—on incarceration of prisoners over the age of fifty. While it costs about

$34,000 a year to keep an able-bodied prisoner locked up, elders can cost as much as twice that amount.

Compassion is a complicated thing. It’s an emotion, both abstract and concrete, shown both in our broad support for groups or issues and in the care that we give those around us. It’s easier to care for people when you trust them, but also when you know you have power over them. When you know they need you.Trust or safety, then, can alter our levels of compassion. I felt guilty for not having more compassion for Moore, a prisoner I met at Mohawk, who later wrote to me, and I didn’t know if it was because of him or because of where I met him. I didn’t want him to be in pain. I didn’t want him to be treated unfairly. But I didn’t want anything to do with him, either. That, I realized, was the line that prison medical staff people had to draw. They may use prison rules or state laws or medical ethics to draw the line. And those laws and rules may make their work easier for them. But it was an institutionalized way of grappling with very complicated emotions like trust and safety and even personal chemistry. Their work is made possible by an ethics, not to be confused with a universal set of moral principles. The ethics of the prison medical staff members was unique to their place of work, a prison. We can and will, as a society, argue about what the laws should be, about what our conscience should let us do.

Complete Article HERE!

Posted on

Death now has no dominion – but it should; it is part of life

By 

As our longevity increases, we are starting to see death as something to be controlled and rebuffed, not as a collective sorrow to be shared

Where death was traditionally presented as a release from the mortal coil, now it is the enemy, something to be challenged and delayed.
Where death was traditionally presented as a release from the mortal coil, now it is the enemy, something to be challenged and delayed.

Winter is a time for my suit, not for warmth but for attendance at funerals; it’s the season for dying. I walked back from one such event with Nicole, who has a progressive take on life.

“It’s all such a sham,” she exclaimed. While I agreed, I thought it wise to ask her what she meant, in case we were not in accord.

“I mean, who believes all that guff now, heaven, happy in God’s care and looking down with love hokum?”

That evening my grandson Daniel dropped by and remarked on the suit.

“Another one bitten the dust?”

Like so many of his age, he’s currently out of work, but I doubt the diplomatic service will be headhunting him. It was a surprise, therefore, when he engaged me in a serious discussion about death, what I thought, what he felt, how his friends saw it. As we talked on, it became clear that he was sensitive to the imminence of death in a way which I had never been at his age. Then I remembered that one of his old school friends had been wasted in Afghanistan.

Yet still it made no sense. After all, 100 years earlier everyone in this country would have known a casualty, and not just of war, but of birth, of infancy, of untreatable conditions aggravated by lack of hygiene and unsafe work; death was a regular visitor.

So, in our world of longevity, where over-65s are living longer than ever before, my grandson’s angst intrigued me. It was not untypical; I’d come across it in many young people. One explanation, as Nicole had implied, was the decline in religion. We have lost our sense of the numinous, of a dimension beyond. Where death was traditionally presented as the gateway to the hereafter, it is now simply the terminus of the here and now. The faith thesis depended for its efficacy on a less than celebratory approach to life. Death served to release us from what was presented as an uncomfortable, almost irrelevant mortal coil. And we prepared for it; to have paid for one’s funeral materially was the mark of a civilised person. Death was an integral part of life.

Today the mortal coil is all we believe we’ve got and its experience has become substantially more comfortable and convenient – and precious. There is now so much more to lose, to look forward to, to miss out on. Death has become an insult against lives that are so immediate, so now, so instant. It has become a challenge, as human knowledge of our biological flaws increases and the technology for repairing them improves. Indeed, it has acquired the status of a disease, one that perhaps we will never eradicate but that can be indefinitely delayed; or managed, its indignity evaded by an offshore arrangement in Switzerland. Either way, it’s something to be controlled. This transformation is in part due to social media and its capacity to inform us about every tragedy within nanoseconds of its event, making us pieces of the global village, where any man’s or woman’s death diminishes us.

Except, uncomfortably, we do not feel diminished by any death – we are increasingly selective. Daniel’s angst is a phenomenon of the rich world. The sad fact is that we in the developed world are all less and less attached to the world, because we are preoccupied with our personal archipelagos. The wars and disease, the deprivation and disasters, do not encroach on us, particularly the young. We are insulated against the death of strangers by a selfie culture that views the world through the lens of its own ego.

The developed world is starting to see death as a personal affront to be rebuffed rather than a collective sorrow to be shared. I’m not sure that’s progress.

Complete Article HERE!

Posted on

In Palliative Care, Comfort Is the Top Priority

By Paula Span

Palliative Care

Last year, when an oncologist advised that Betty Chin might benefit frompalliative care, her son Kevin balked.

Mrs. Chin, a retired nurse’s aide who lives in Manhattan’s Chinatown, was undergoing treatment for a recurrence of colorectal cancer. Her family understood that radiation and chemotherapy wouldn’t cure her, but they hoped doctors could keep the cancer at bay, perhaps shrinking her tumor enough to allow surgery or simply buying her more time.

Mrs. Chin, 84, was in pain, fatigued and depressed. The radiation had led to diarrhea, and she needed a urinary catheter; her chemotherapy drugs caused nausea, vomiting and appetite loss.

Palliative care, which focuses on relieving the discomfort and distress of serious illness, might have helped. But Mr. Chin, 50, his mother’s primary caregiver, initially resisted the suggestion.

“The word ‘palliative,’ I thought of it as synonymous with hospice,” he said, echoing a common misperception. “I didn’t want to face that possibility. I didn’t think it was time yet.”

In the ensuing months, however, two more physicians recommended palliative care, so the Chins agreed to see the team at Mount Sinai Hospital.

They have become converts. “It was quite a relief,” Mr. Chin said. “Our doctor listened to everything: the pain, the catheter, the vomiting, the tiredness. You can’t bring up issues like this with an oncologist.”

Multiple prescriptions have made his mother more comfortable. A social worker helps the family grapple with home care schedules and insurance. Mr. Chin, who frequently translates for his Cantonese-speaking mother, can call nurses with questions at any hour.

Challenges remain — Mrs. Chin still isn’t eating much — but her son now wishes the family had agreed to palliative care earlier.

Perhaps it’s not surprising that many families know little about palliative care; it only became an approved medical specialty in 2007. It has grown rapidly in hospitals: More than 70 percent now offer palliative care services, including 90 percent of those with more than 300 beds.

But most ailing patients aren’t in hospitals, and don’t want to be. Outpatient services like Mount Sinai’s have been slower to take hold. A few hundred exist around the country, estimates Dr. Diane Meier, who directs the Center to Advance Palliative Care, which advocates better access to these services.

Dr. Meier said she expects that number to climb as the Affordable Care Act and Medicare continue to shift health care payments away from the fee-for-service model.

Because most people with serious illnesses are older, seniors and caregivers should understand that palliative care offers more care as needed, not less. Unlike hospice, patients can use it at any point in an illness — many will “graduate” as they recover — without forgoing curative treatment.

Like hospice, however, palliative care focuses on quality of life, providing emotional and spiritual support for patients and families, along with drugs and other remedies to ease symptoms. Its practitioners help patients explore the complex medical decisions they often face, then document their preferences.

It pays off for patients and families. In 2010, a randomized trial of 151 patients with metastatic lung cancer at Massachusetts General Hospital found that those who received early palliative care scored significantly higher on quality of life measures than those receiving standard care, and were less likely to suffer from depression.

They were also less likely to get aggressive end-of-life treatment like chemotherapy in their final weeks. Yet they survived several months longer.

Other studies have found similar benefits. Compared with control groups, palliative care patients get greater relief from the breathlessness associated with lung diseases; they’re less likely to spend time in intensive care units; they report greater satisfaction with care and higher spiritual well-being.

And they do better if they seek palliative care early. A new study conducted at the cancer center at the University of California, San Francisco, found that of 922 patients who had died, most in their 60s and 70s, those who had received palliative care for 90 days or more were less likely to have late-life hospitalizations and to visit intensive care units or emergency rooms than those who sought care later.

The reduced hospital use also saved thousands of dollars per patient, a bonus other studies have documented.

“If people aren’t in excruciating pain at 3 a.m., they don’t call 911 and go to the emergency room,” Dr. Meier pointed out.

Yet palliative care remains underused. Even at the well-established U.C.S.F. cancer center, which began offering the service in 2005, only a third of patients in the study had received a palliative care referral.

“We hear this all the time: ‘They’re not ready for palliative care,’ as if it’s a stage people have to accept, as opposed to something that should be a routine part of care,” said Dr. Eric Widera, who practices the specialty at the university.

In fact, the cancer center at U.C.S.F. adopted a euphemistic name for its palliative team: “the symptom management service.”

“We deliberately called it that because of how much ignorance or confusion or even bias there was against the term ‘palliative care,’” said Dr. Michael Rabow, director of the service and senior author of the new study.

Although 40 percent of their palliative care patients can expect to be cured, “there clearly still are both patients and oncologists who have an inappropriate association in their minds,” he said. “They still associate palliative care with giving up.”

To the contrary, palliative care can help patients live fully, regardless of their prognoses. Consider Herman Storey, a 71-year-old San Franciscan, an Air Force veteran, a retired retail buyer and manager, a patient who feels quite well despite a diagnosis of inoperable liver cancer.

His oncologist at the San Francisco V.A. Medical Center — the Department of Veterans Affairs has been a leader in this specialty — referred him to the palliative care service last fall when Mr. Storey said he didn’t intend to pursue chemotherapy.

“They wanted me to reconsider,” Mr. Storey said, “but I don’t want to get sick and tired of being sick and tired.” Chemotherapy for a previous bout of cancer had helped him survive for three years; it had also made him very ill.

Dr. Barbara Drye, medical director of outpatient palliative care at the cancer center, walked Mr. Storey through his options. The suggested chemo might extend his life by several months, she explained. It would also take a toll.

“It can cause not only nausea and diarrhea, but it affects your taste,” she said. “Food tastes like cardboard. Fatigue can markedly decrease the amount of activity someone can do.”

This time, Mr. Storey decided against treatment. A skilled cook, proud of the duck confit dinner he served guests at Christmas, he wants to continue to enjoy cooking and dining out with friends.

Besides, he has plans: In May, he expects to visit Paris for the 11th time, to mark his 72nd birthday.

Dr. Drye, who helped Mr. Storey complete his advance directives, will arrange for home or inpatient hospice care when he needs it. Until then, she sees him monthly.

She has gently suggested that he take his trip a bit earlier; he has declined. “I feel great,” he told me.

So this is also life with palliative care: Mr. Storey and a companion have rented an apartment near the Place des Vosges. A Parisian friend will throw a dinner party for him, as usual. And he’ll eat at that little Alsatian restaurant where they always remember him.

Complete Article HERE!