01/31/18

With the End in Mind & Letting Go review: Ways to have a good death

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By Gail Bell

In my early years in hospital pharmacy we made Brompton’s Cocktail in accordance with prevailing clinical guidelines, that is, “to order, for terminal patients”. The cocktail consisted of morphine crystals, cocaine powder, alcohol, syrup and chloroform water and it was given sparingly, on the fourth hour, to a patient in extremis.

In her welcome, engaging book, With the End in Mind, Dr Kathryn Mannix, revisits this practice, using it to highlight the days when medical morphine was spooned out cautiously, often in doses too feeble or too potent for the individual, the days, she writes “before we had worked out how to titrate painkillers”.

Informed by her staff that a new hospice admission was refusing morphine on the basis of bad memories of Brompton’s Cocktail, she visited the dissenter personally and discovered a retired psychiatrist who had once tutored her at medical school. In his experience, patients were rendered semi-conscious by the “industrial strength drug mixture”, unable to speak coherently or with dignity, attributes he could not accept for himself or put his family through. Mannix conquered the role reversal implications of ministering to her one-time mentor and employed her softly, softly conversational approach to bring him to a position where “he might allow that medicine had progressed” since the 1980s.

Mannix is a British palliative-care specialist who, in her own words has spent “half a lifetime … keeping company with the dying”. Her book is part memoir, part witnessing and a good part wise counsel in best practice for the dying. Her strong suit is conquering the moment with a quiet conversation, often begun in an atmosphere of heightened emotions, fixed beliefs and the competing interests of family gathered at the deathbed.

She is a natural storyteller with an eye for detail, dialogue and the telling moment. “I am offering the reader my eyes and ears, my seat at the table, my place in the conversations, and my perspective on events.”

As recently as 2016, Australian author, the late Cory Taylor, wrote in Dying: A Memoir: “For so many of us, death has become the unmentionable thing, a monstrous silence. But this is no help to the dying, who are probably lonelier now than they’ve ever been.”

Mannix wants the lost vocabulary as well as the etiquettes of dying brought back to the death bed. She teaches families what to expect, to give each phase of the body’s shutting down a name. She begins with “the gradual increase in daytime sleeping, the gradual reduction in time spent awake” and ends at Cheyne-Stokes pattern breathing, cycles of fast-to-slow breaths, often with long gaps between, until the “gentle ending of the cycle”. The approach of death, she hopes, will one day be conceived more generally as a process, like birthing, moving stage by stage to an outcome.

The other string to Mannix’s bow is her qualification as a Cognitive Behaviour Therapist, a discipline she used to develop coping strategies for people facing impending death (she wrote Britain’s innovative CBT First Aid Plan for palliative care).

This psychological intervention is reported to dramatic effect in the case study of 22-year-old Mark, who was in the end stage of cystic fibrosis with no transplant available. He was incapacitated by panic attacks, gripped by fear and very angry. Mannix took his fear, put it on paper in a diagram and allowed him to discover how adrenaline was driving the circuit, creating a self-defeating increase in his panic.

The liberating effect of studying the pattern allowed Mark a few months of relative freedom from fear (including a pub outing with mates) before he developed a fatal chest infection. Mannix was called to see him and was greeted by Mark at his most triumphant: “You should be f—ing proud of me … I’m f—ing dying and I’m not f—ing panicking!”

Dr Charlie Corke is an Australian intensive-care specialist and a strong proponent of timely advanced-care planning. His book, Letting Go, walks the same terrain as Mannix but his map is the ICU of a busy hospital where decisions are made on the run, as it were, not in the relative quiet of a hospice setting. His patients arrive in ambulances, desperately ill, close to death, often unable to communicate their wishes, and reliant on a frantic relative’s instructions.

“Doctors and families feel a tremendous responsibility to do something to save (or extend) life,” he writes. “This happens however unpleasant the medical journey is likely to be — and however poor the outcome.”

In crisp, clear prose Corke confronts the reader with the scenario most of us in Western society are likely to face after a period of declining health and function: ambulance, hospital, unconsciousness, no plan in place, family disagreements about treatment, escalation of medical intervention, and finally, our last days spent “connected to machines, cared for by strangers, and separated from family”.

“Medical terminology will dominate our last days and weeks,” he writes.

While not denigrating his own profession, he takes a humanistic approach to its limits. The reader learns of the “covenantal ethic” whereby a surgeon promises to use his or her skills “to battle death on behalf of the patient. In return, the patient puts their trust in the surgeon and accepts whatever is required”. The covenant can have unwanted outcomes, notably when a surgeon has not been given prior permission “to stop if things [go] badly”.

Keeping in mind that “saving is what doctors do”, Corke advocates forward planning well in advance of old age and infirmity, in writing, with the added backup of an appointed decision maker.

He presents brief case histories to show how things can go wrong. Rosalie’s story, for instance, gives pause for thought when appointing a decision maker. She chose May, her only daughter, as her agent. May gave up her job to care for her mother and swore to sensitively respect her mother’s wishes. When Rosalie was taken to hospital after developing a severe infection, May acted upon her mother’s stated wishes: comfort care with no burdensome attempts at cure.

However, May’s five brothers arrived at the hospital and exerted pressure on May to instruct the doctors to do everything possible to “save Mum”. Rosalie was put on life support, had six operations, developed multiple organ failure and finally died. May, writes, Corke, “seemed crushed and guilty”. The message is clear, he summarises, inform everyone concerned beforehand and obtain reassurance that all will respect the bargain.

Making choices is hard. Corke suggests that “prior (well-considered) wishes should carry more weight than a later decision made in a crisis”. And he covers all the bases, from religious to legal ramifications, to distorted portrayals of the success rates of CPR in TV and film, and emotive journalism around withdrawing life support.

The book ends with practical tips and accompanying case histories, tying up Corke’s thesis with the kind of wise, informed advice we crave in the era of Dr Google, advice that may be more useful than we think in light of the recent Productivity Commission Report into palliative care in Australia. Seventy per cent of Australians wish to die at home, without pain and surrounded by family. The “without pain” part is the work of the severely underfunded palliative care sector. Fourteen per cent achieve that goal.

As a manual for how to avoid ending up in ICU, in what one of Corke’s patients called “the bad bit at the end”, Letting Go is a guide book for our age.

Complete Article HERE!

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01/30/18

What to Say When You Meet the Angel of Death at a Party

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After years of living with stage IV cancer, I have some suggestions.

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EVERY 90 days I lie in a whirling CT machine, dye coursing through my veins, and the doctors look to see whether the tumors in my liver are growing. If they are not, the doctors smile and schedule another scan. The rhythm has been the same since my doctors told me I had stage IV colon cancer two and a half years ago. I live for three months, take a deep breath and hope to start over again. I will probably do this for the rest of my life. Whatever that means.

When my scan is over, I need to make clear to my friends and my family that though I pray to be declared cured, I must be grateful. I have three more months of life. Hallelujah.

So I try to put the news in a little Facebook post, that mix of sun and cloud. I am trying to clear the linguistic hurdles that show up on my chart. Noncurative. Stage IV. I want to communicate that I am hoping for a continued “durable remission” in the face of no perfect cure, but the comments section is a blurry mess of “You kicked cancer’s butt!” and “God bless you in your preparations.”

It feels impossible to transmit the kernel of truth. I am not dying. I am not terminal. I am keeping vigil in the place of almost death. I stand in the in-between where everyone must pass, but so few can remain.

I was recently at a party in a head-to-toe Tonya Harding costume, my blond wig in a perfect French braid, and a woman I know spotted me from across the dance floor.

“I guess you’re not dying!” she yelled over the music, and everyone stopped to stare at me.

“I’m working on it!” I yelled back, after briefly reconsidering my commitment to pacifism.

We all harbor the knowledge, however covertly, that we’re going to die, but when it comes to small talk, I am the angel of death. I have seen people try to swallow their own tongue after uttering the simple words “How are you?” I watch loved ones devolve into stammering good wishes and then devastating looks of pity. I can see how easily a well-meaning but ill-placed suggestion makes them want to throw themselves into oncoming traffic.

A friend came back from Australia with a year’s worth of adventures to tell and ended with a breathless “You have to go there sometime!” He lapsed into silence, seeming to remember at that very moment that I was in the hospital. And I didn’t know how to say that the future was like a language I didn’t speak anymore.

Most people I talk with succumb immediately to a swift death by free association. I remind them of something horrible and suddenly they are using words like “pustules” at my child’s fourth-birthday party. They might be reminded of an aunt, a neighbor or a cousin’s friend. No matter how distant the connection, all the excruciating particularities of this person’s misfortune will be excavated.

This is not comforting. But I remind myself to pay attention because some people give you their heartbreak like a gift. It was a month or so into my grueling chemotherapy regimen when my favorite nurse sat down next to me at the cancer clinic and said softly: “I’ve been meaning to tell you. I lost a baby.”

The way she said “baby,” with the lightest touch, made me understand. She had nurtured a spark of life in her body and held that child in her arms, and somewhere along the way she had been forced to bury that piece of herself in the ground. I might have known by the way she smoothed all my frayed emotions and never pried for details about my illness. She knew what it was like to keep marching long after the world had ended.

What does the suffering person really want? How can you navigate the waters left churning in the wake of tragedy? I find that the people least likely to know the answer to these questions can be lumped into three categories: minimizers, teachers and solvers.

The minimizers are those who think I shouldn’t be so upset because the significance of my illness is relative. These people are very easy to spot because most of their sentences begin with “Well, at least ….” Minimizers often want to make sure that suffering people are truly deserving before doling out compassion.

My sister was on a plane from Toronto to visit me in the hospital and told her seatmate why she was traveling. Then, as she wondered when she had signed up to be a contestant in the calamity Olympics, the stranger explained that my cancer was vastly preferable to life during the Iranian revolution.

Some people minimize spiritually by reminding me that cosmically, death isn’t the ultimate end. “It doesn’t matter, in the end, whether we are here or ‘there.’ It’s all the same,” said a woman in the prime of her youth. She emailed this message to me with a lot of praying-hand emoticons. I am a professor at a Christian seminary, so a lot of Christians like to remind me that heaven is my true home, which makes me want to ask them if they would like to go home before me. Maybe now?

Atheists can be equally bossy by demanding that I immediately give up any search for meaning. One told me that my faith was holding me hostage to an inscrutable God, that I should let go of this theological guesswork and realize that we are living in a neutral universe. But the message is the same: Stop complaining and accept the world as it is.

The second exhausting type of response comes from the teachers, who focus on how this experience is supposed to be an education in mind, body and spirit. “I hope you have a ‘Job’ experience,” one man said bluntly. I can’t think of anything worse to wish on someone. God allowed Satan to rob Job of everything, including his children’s lives. Do I need to lose something more to learn God’s character? Sometimes I want every know-it-all to send me a note when they face the grisly specter of death, and I’ll send them a poster of a koala that says, “Hang in there!”

The hardest lessons come from the solutions people, who are already a little disappointed that I am not saving myself. There is always a nutritional supplement, Bible verse or mental process I have not adequately tried. “Keep smiling! Your attitude determines your destiny!” said a stranger named Jane in an email, having heard my news somewhere, and I was immediately worn out by the tyranny of prescriptive joy.

There is a trite cruelty in the logic of the perfectly certain. Those people are not simply trying to give me something. They are tallying up the sum of my life — looking for clues, sometimes for answers — for the purpose of pronouncing a verdict. But I am not on trial. To so many people, I am no longer just myself. I am a reminder of a thought that is difficult for the rational brain to accept: that the elements that constitute our bodies might fail at any moment. When I originally got my diagnosis at age 35, all I could think to say was, “But I have a son.” It was the best argument I had. I can’t end. This world can’t end. It had just begun.

A tragedy is like a fault line. A life is split into a before and an after, and most of the time, the before was better. Few people will let you admit that out loud. Sometimes those who love you best will skip that first horrible step of saying: “I’m sorry. I’m so sorry this is happening to you.” Hope may prevent them from acknowledging how much has already been lost. But acknowledgment is also a mercy. It can be a smile or a simple “Oh, hon, what a year you’ve had.” It does not ask anything from me but makes a little space for me to stand there in that moment. Without it, I often feel like I am starring in a reality program about a woman who gets cancer and is very cheerful about it.

After acknowledgment must come love. This part is tricky because when friends and acquaintances begin pouring out praise, it can sound a little too much like a eulogy. I’ve had more than one kindly letter written about me in the past tense, when I need to be told who I might yet become.

But the impulse to offer encouragement is a perfect one. There is tremendous power in touch, in gifts and in affirmations when everything you knew about yourself might not be true anymore. I am a professor, but will I ever teach again? I’m a mom, but for how long? A friend knits me socks and another drops off cookies, and still another writes a funny email or takes me to a concert. These seemingly small efforts are anchors that hold me to the present, that keep me from floating away on thoughts of an unknown future. They say to me, like my sister Maria did on one very bad day: “Yes, the world is changed, dear heart, but do not be afraid. You are loved, you are loved. You will not disappear. I am here.”

Complete Article HERE!

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01/29/18

Morbid? No – Coco is the latest children’s film with a crucial life lesson

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Some say we’re forcing children to face issues beyond their years. But films can help make them resilient, self-aware adults

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At the weekend Disney Pixar’s new film, Coco, hit cinemas. It topped the UK box office and has already won a Golden Globe, so you can probably guess what it’s about. Princesses, right? Or dinosaurs, maybe.

Nope. It’s death: actual send-the-12-year-old-hero-to the-afterlife-to-meet-his-dead-relatives-type death. Set during the Mexican Día de Muertos (Day of the Dead), when people remember their departed loved ones, its core message is that those we lose live on in our memories. Speaking of memory, there’s also a character with senile dementia. Really kid-friendly stuff.

Children’s films have always had life lessons at their heart. And while most of them have traditionally sat in the positive platitudes category – work hard, be brave, do the right thing – there have been some home truths over the years, too: people are cruel (the Dumbo lesson); you’ll outgrow your childhood and its trappings (thanks, Toy Story 2).

But in recent years, as young people’s lives have become more complex and challenging than ever before, kids’ movies have stepped up, tackling increasingly tricky subjects. If there’s something you’re loth to talk to a child about, chances are there’s a film that will do it for you.

Death is one tough subject that has always been common – even if not quite as central as it is in Coco. Disney’s first heroine, Snow White, was an orphan, and they were soon offing loved ones on screen, starting with Bambi’s mum. In fact, a 2014 British Medical Journal study found that, proportionally, main characters die on screen in more children’s animated films than dramatic films for adults.

By 1994, The Lion King’s Simba was experiencing real grief, and in Toy Story 3 (2010) the heroes slid towards seemingly certain death, hand-in-hand, eyes closed, accepting. But they escaped: death was still a plot point. These days it is the plot.

If you’re thinking life can be as painful as death, modern kids’ films have got that covered too. Take the opening sequence of Pixar’s Up (2009). You know, the one that shows you how dead you are inside by how long you can last without blubbing. It charts every punishing blow of adult life from losing a baby to money troubles to repeatedly putting your dreams on hold.

In the last decade, Disney films have also turned their gaze outwards, championing society’s mistreated and marginalised. Disney’s 2013 megahit Frozen was a feminist triumph, with two kick-ass female leads and a finale centred on sisterhood. It also briefly showed what many believe was Disney’s first same-sex couple, complete with cute kids. And it opened a conversation about parental abuse. Not the overt torture of Disney’s early wicked stepmothers, but a more insidious brand that saw Elsa’s parents shame her for being different.

In 2015, Pixar’s Inside Out tackled what is often the very trickiest subject for children to understand – their own feelings. Set inside the head of a young girl struggling with life, it personified her four key emotions, and concluded that it’s actually totally fine to feel sad, something any child struggling with depression will find deeply reassuring.

And if that wasn’t grown-up enough, 2016 saw Disney release Zootropolis, an anthropomorphic comedy with a hard-hitting message about racial inclusion – highly subversive given the xenophobic political rhetoric that was rife at the time.

Some may say we’re forcing kids to face issues that are beyond their years – that we should go back to the old days where, aside from the odd bereavement, most troubles were solved with a little courage and a singsong. But times have changed, and the way children experience life has changed, too. There are new pressures, new fears, new opportunities, and the chance to mix with people whose identities and choices are, thankfully, being newly embraced by society.

Films are the perfect way for children to understand all this – not only via storylines that they can relate to but in a safe space where they can ask questions freely.

What’s more, the common reference point that films provide means that answering those questions becomes easier for parents, and a more open and honest conversation can develop. Lets face it, most kids won’t even bat an eyelid at the stuff adults worry will shock or confuse them. Kids accept the society we present to them, meaning films that normalise any and every expression of what it means to be human are a key tool in moving us towards a more inclusive society.

But perhaps most importantly of all, films can help kids cope better when life’s struggles hit them for real. They’ve already experienced some of the associated emotions vicariously. They’ve seen how the characters handle the situation. Perhaps they’ve even thought about what they’d do in the same position. If modern kids’ films can help the next generation grow into resilient, self-aware, inclusive adults, I say: keep them coming.

Complete Article HERE!

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01/28/18

End-Of-Life Care Is A New Beginning For Some Homeless Patients

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by Mariana Dale

Inside a medical care facility in central Phoenix there’s a small chapel with frosted glass windows.

On the wall there’s more than a dozen framed photos of smiling faces. These are the people who have passed on here; many were in the final stages of their life.

James Martz was diagnosed with lung cancer in 2017 and hit rock bottom before getting help at Circle the City.

“They all brought their gifts to this world and they ended up in a place where they had no one,” said Lin Sue Cooney, Hospice of the Valley Community Engagement director. “It’s our collective responsibility as a community to make sure that they have dignity and comfort at the end of life.”

The medical care center Circle the City has 50 beds to care for the homeless, and several are reserved for hospice patients. Medicaid can pay for end-of life-care and even those who can’t pay anything are still treated.

The number of homeless older Americans is rising.

The state’s largest emergency shelter, Central Arizona Shelter Services, known as CASS, saw 423 clients over age 62 last year.

CEO Lisa Glow said the oldest, 89, came into the shelter pushing a walker. Her son was taking her pension and she was homeless.

“There’s vulnerability to fraud, vulnerability to disease, vulnerability to abuse and being taken advantage of,” Glow said. She said there aren’t enough resources at CASS or in the Valley to handle the predicted influx of older people who will end up on the streets and in poor health.

“Being an emergency shelter, people have to take care of their basic daily living needs,” Glow said.

Jesus Tovar, 67, was discharged from the hospital to Circle the City.

Me sufre mucho en la calle, mucho frío, llueve, a veces no tienes que comer.” Tovar said he suffered a lot in the streets; it was cold, it rained and sometimes he didn’t have anything to eat. Tovar is diabetic and has problems with his lungs and heart.

His voice became thick with emotion when he talked about life on the street.

Aquí tienes cama. Te dan tus medicinas.” Here there’s a bed, they give you your medicine. It’s like another family, Tovar said. “Aquí tiene como otro familia.

Tovar is also working toward connecting with his own family through a social worker at the center.

Jesus Tovar said he became disconnected with his family when he lived on the streets. He hopes to mend their relationship with the help of a social worker at Circle the City.

“With that aging comes an inherent need for better end of life care and we have to be able to rise to that challenge,” said Brandon Clark, Circle the City CEO.

“When people come here on hospice they frequently have no one,” Clark said. “It’s rare they have no one when they leave this world.”

‘Pride almost killed me’

Almost everything James Martz is wearing from his UnderArmor sweatshirt to his tennis shoes is new, at least to him.

A chunky silver ring on his right hand is one of the only material possessions Martz still has from his “old life.” It represented his time as a member of the North American Hunting Club.

“Pride almost killed me.” Martz said it’s what kept him from asking for help earlier.

Martz can list the events that lead to rock bottom — drug use, an eviction, a pneumonia diagnosis that revealed lung cancer, chemotherapy.

“It would make me throw up, the other thing,” Martz said grimacing. “You didn’t want to eat. You wanted to sleep all the time.”

In September, Martz said his oncologist gave him six to nine months to live. 

Around that time he was sleeping in his broken down 1993 Oldsmobile Cutlass in a strip mall parking lot in Mesa. Eventually police kicked him out after the center’s owner complained.

“I just grabbed my meds and anything essential and just walked off the property,” Martz said. He walked until the skin on his feet bubbled into blisters. A hospital covered the wounds with salve and discharged him.

“I got out of the hospital and I tried to get out of the wheelchair they wheeled me in and I couldn’t even stand up,” Martz said. Then he remembered he had a number for Hospice of the Valley. 

“He was very sick, sad, uncertain of the future, some anxiety and I think he just didn’t know what was going to happen,” said Kim Despres, a program director at Circle the City where Martz ended up.

RELATED: KJZZ’s Special Series, Homeless In Plain Sight

Homeless people can recover there when they’re not sick enough to stay in a hospital, but not well enough to be on the streets.

It’s also one of the only places that provides end-of-life care for people who have nowhere else to go. James Martz had decided he was done with chemotherapy and entered hospice there.

Hospice of the Valley took care of 18,500 patients and family members last year. It’s just one of dozens of hospice organizations in the Valley.

Complete Article HERE!

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01/27/18

Americans are pack rats. Swedes have the solution: ‘Death cleaning.’

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by Jura Koncius

If your family doesn’t want your stuff when you’re alive, they sure won’t want it when you’re dead.

That’s the blunt assessment of yet another self-help author from abroad who is trying to get Americans, who have an addiction to collecting and storage units, to clean up their acts.

The latest volley in the decluttering business comes from Stockholm, where 80-ish artist Margareta Magnusson has just published a slim yet sage volume, “The Gentle Art of Swedish Death Cleaning.” The book will be published in the United States in January.

While Japanese item-control diva Marie Kondo gave us strict instructions to keep only things that spark joy, Magnusson’s book is straightforward and unsentimental (with a bit of humor). The main message from this mother of five is: Take responsibility for your items and don’t leave them as a burden for family and friends. It’s not fair. Magnusson says you can keep things that evoke good memories; there are no hard-and-fast rules such as folding your remaining T-shirts to stand upright in your drawers, as dictated by the KonMari method.

The concept of decluttering before you die, a process called “dostadning,” is part of Swedish culture. (It comes from the Swedish words for death and cleaning.) Karin Olofsdotter, 51, the Swedish ambassador to the United States, says her mother and father, who are in their 80s, are in the midst of it back home.

“My parents and their friends are death cleaning, and we all kind of joke about it,” Olofsdotter says. “It’s almost like a biological thing to do.” Olofsdotter says part of Swedish culture is living independently and never being a burden to anyone. How you keep your home is a statement of that.

Magnusson, who has moved 17 times, says women often end up doing the death cleaning. After her husband died, she had to declutter their house; it took her almost a year before she could downsize to a two-room apartment. She says that although it felt overwhelming, she is glad she did it herself, as her husband would have wanted to keep everything and her kids would have disagreed about what to keep and what to toss. This way, she made her own decisions. Now she continues to do it on a regular basis.

Magnusson suggests that age 65 is a good time to start death cleaning, but the process is freeing at any age.

A few of her tips: Don’t start with your photos, as you’ll get bogged down in your memories and never accomplish anything. Make sure you keep a book of passwords for your heirs. Give away nice things you don’t want as gifts, such as china or table linens or books, as opposed to buying new items. Keep a separate box of things that matter only to you, and label it to be tossed upon your death. It’s okay to keep a beloved stuffed animal or two.

Magnusson and one of her daughters filmed a video in which she talks about why she decluttered and how it’s not a sad process, but more of a relief. Her daughter asks whether her mom would help her begin death cleaning. They go to a storage locker overflowing with luggage and clothes and blankets topped by a garden gnome.

“Oh, my God. What are you going to do with all this crap?” her mother says in perfect English, taking a look around. They discuss how long it’s going to take.

“You are never ready with your death cleaning because you don’t know when you are going to die,” Magnusson says. “So it goes on and on.”

When you are dead, then it stops, they agree.

“Finally,” Magnusson says.

Complete Article HERE!

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01/26/18

Better Angels

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Death with dignity advocate Bruce Wilson, facing his end, wants you to know he’s grateful

Pulmonologist Glenn Ragalie (right) says goodbye to former colleague and cardiologist turned hospice physician Bruce Wilson (foreground) after visiting Tuesday, January 16, 2018 at Froedtert Hospital in Wauwatosa, Wis. Wilson has end stage pancreatic cancer.

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Not long after he wrote that, Bruce became a hospice care physician. He has dedicated himself to nudging, sometimes dragging, his medical colleagues in particular and the public in general to stop, take a deep breath and talk about how we would like to handle our inevitable demise.

Last February, Bruce was diagnosed with pancreatic cancer.

In the months that followed, the disease proved to be indifferent to chemotherapy and beyond surgical intervention.

Bruce, 66, is home with Barb, his wife of almost 34 years. If all goes as hoped, that is where he will die.

“People say to me, ‘This must be so surreal,’” he said during a recent week of in-patient treatment at Froedtert Hospital.

(Bruce is not opposed to end-of-life medical intervention. Doctors, he says, have a very important part to play in improving the quality of their patients’ final days. What he is opposed to are ill-informed medical decisions based on fear and desperation that too often merely extend a dying person’s misery.)

“And you know, it is sort of odd. I’m sitting in the front row watching myself. It’s afforded me the opportunity to be right square in the middle of it and say, ‘OK. How am I going to react to this reality?’ ”

Bruce, in these final days, has plenty to say about death and dying, but here’s the main thing he wants people to know:

“I am so grateful.”

He’s grateful that he has had time to love, to admire, to grieve, to celebrate, to forgive and to be forgiven by the people he cares about most.

“You can’t have that when you have the symptoms of a very aggressive cancer, and you are being eaten alive from the inside and you’re in horrible pain all the time and you develop delirium.

“That opportunity is lost.”

To make the most of the opportunity you are given, Bruce said, you need to prepare.

An advance directive needs to be in place so that your doctors and family don’t have to guess at what you wish will happen as you die.

“So you can mourn together, share the loss together, but also be grateful together for your presence in each other’s life.”

Barb, who was sitting near Bruce’s hospital bed, said, “The thing you need to understand to really see what this gratitude thing does is — there is a kind of ripple effect.”

Sharing gratitude, Barb said, “is such a gift.”

“I don’t have to mourn that he was so miserable, he was so afraid, he didn’t get what he needed, he was so unhappy, he was suffering or in pain.”

It’s the difference between grief and regret.

But here is the hard part, Barb said. Here is what you must do before the time comes, as surely it will, that you can no longer deny that you will die.

You have to live.

“You die how you live,” Barb said.

“And if you have purpose and gratitude and all those things, then that is how you are going to die.”

Complete Article HERE!

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01/25/18

Let’s talk about death

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Dr Munguntsetseg and Australian Volunteer Diane Anthony talk with family members of patients at Mongolia’s National Cancer Centre. Diane helped set up training sessions and support groups for carers of patients in the palliative care ward. Mongolia 2013.

Death and dying surrounds us, yet many of us see it as an uncomfortable taboo subject. As part of a series of articles on encouraging an open dialogue around death and dying, we asked various healthcare professionals, academics, and members of the public who have experienced palliative care the following question:

How important is it that we as a society are open to discussing death and dying?

‘It is never too soon in life to talk about death and dying: I have seen too many people regret the fact that they did not know the final wishes of a loved one – and I have also experienced the joy of attending a funeral that was a true reflection of a life lived… As a former Hospice Social Worker, but primarily as a human being, my advice would be:

For everyone’s sake – let the conversation begin!’

– Sue Taplin is a qualified social worker with a practice background in palliative care. She has held academic posts at the University of Nottingham, University of Suffolk and currently at Anglia Ruskin University, and has a Doctorate in Social Work from the University of East Anglia.

‘My mixed-race background has given me different perspectives when discussing death and dying. My Asian grandmother, totally dependent on her two sons, regularly has frank discussions about her end of life. I think these help not only her, but also close family in preparing themselves for the inevitable. Conversely, my English grandparents who live alone do not have the same level of openness about the topic with relatives, and consequently the future holds great fear of the unknown. To me, these personal examples highlight the importance of having these conversations.’

– Sian Warner is a Third-Year Medical Student at the University of Birmingham.

‘Death is certain. What is uncertain is when. So what do we do? Talking about death will help make the final stage of life as good as possible, instead of pretending it will never happen. So, advance care planning is a big part of the solution. All of us, including health and social care professionals, need to create opportunities for people to talk about the things that matters most to them, what they do and don’t want to happen. This will enable more people to live well until they die, allowing a good life to culminate in a good death.’

– Keri Thomas is the Founder and National Clinical Lead for the Gold Standards Framework Centre in End of Life Care in Shrewsbury. She is also the co-author of Advance Care Planning in End of Life Care, Second Edition (OUP, 2017).

‘I was given the news two years ago that I could not be cured of my cancer. I feel it is important to be able to openly discuss my fears and thoughts on dying. I feel that society as a whole has a taboo about the question of dying, and most people will side-step the issue when talking to me. Death is something we all face – rich and poor alike – and I think we can all do more to make the discussion more open and informative. I have found that Palliative Care is a refreshing format to further the discussion.’

– John Joyce is from Mayo, Ireland and has been fighting cancer for five years. John is a member of Voices 4 Care.

‘Palliative care should be available to anyone who needs it regardless of diagnosis or location of care. Talking about death and dying can be perceived as contentious with some suggesting that it can be distressing for people to think about their own mortality. However, recent research indicates that people appreciate the opportunity to talk about their preference for care at the end-of-life. Advance care planning provides people with the opportunity to think and talk about their wishes and provides healthcare professionals with the chance to ensure that these wishes, where possible, are met at the end-of-life.’

– Dr Julie Ling is the CEO of the European Association of Palliative Care.

‘Due to our ageing population, we can expect an increasing number of people dying in the next 25 years. Over half of these deaths will be people aged 85 years or over. It is important and timely for us to have a public debate on how we best prepare for this, to understand what aspects of care are important to people nearing the end of life, and where we should be directing investment to meet these growing needs.’

– The Palliative Care Research Society is a society dedicated to promoting research into all aspects of palliative care and to facilitating its dissemination.

‘It shouldn’t be, but it is the complete conversation stopper: “Have you thought how you would like to die?”

Death, dying, and passing on surrounds us on a daily basis in our neighbourhoods, on the television, and on social media, yet we never personalise it, never look at our own bodies and imagine them injured, ageing, or terminally ill. We never try to visualise our own non-existence and its effect on others – we shiver, shrug, and continue with our finite lives. “All living things have a designated lifespan – but not me!”’

– Elizabeth Fuller is a long-term volunteer at the Specialist Palliative Care Ward at Our Lady’s Hospice, Harold’s Cross, Dublin.

Just as life and birth is a common part of society, so too is death and dying. The celebration of life and birth promotes it as a shared experience. The birth process is very patient and family-centered with attention to social, cultural, and spiritual context. However, death and dying is not celebrated in this way and results in isolation, avoidance, and surprise. The result is many deaths are medicalized and are not guided by patient preference. Society needs to make death and dying more patient-centered.

– Constance Dahlin is the Director of Professional Practice for the Hospice and Palliative Nurses Association in Pittsburgh, Pennsylvania and a Palliative Nurse Practitioner at North Shore Medical Center in Salem, Massachusetts. She is a co-editor of Clinical Pocket Guide to Advanced Practice Palliative Nursing (OUP, 2017).

Complete Article HERE!

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