What type of death do you want?

By Bianca Nogrady

We can talk about good deaths and bad deaths, cheating death or embracing it, but the one thing that we all seem to reach for is this: when we die, we want to do it our way.

Tony Smith* says his mother and father were lucky, if such a word can be used for death.

For while they both experienced long-running, debilitating, and often traumatic health problems in the years before each of them died, when the time came, they died the way they wanted to.

Mr Smith’s father died suddenly in bed from a massive heart attack. His mother chose to be kept comfortable in her final days and hours, no heroic measures undertaken to prolong her life, no resuscitation to bring her back from the brink. She was surrounded by her family as she exited this world at age 78, which was, as Tony says, “on her terms”.

Asking someone how they want to die is awkwardly similar to the stock line from a Bond villain. But at a certain point in our lives, it is one of the most important questions for an individual to ask themselves, for a doctor to ask their patient, and for a family to ask their ailing loved one.

This question can make the difference between someone seeing out their final hours in a peaceful setting — at home, or in a hospice, or in a care facility — surrounded by loved ones, with the only medical interventions being ones to ease discomfort; or dying in a loud, busy, bright emergency department.

We want to die at home

According to one of many surveys with similar results, a South Australian study found 70 per cent of people said they would want to die at home if they had a terminal illness and 19 per cent said a hospital.

But data from the Australian Institute of Health and Welfare showed that in 2011 about 35 per cent of older people died in an emergency care setting and just 3 per cent died in community care.

Dying in a hospital setting is also expensive; it accounts for nearly half of the health costs associated with dying in this group. According to a 2014 report from The Grattan Institute, each year more than $2 billion is spent on older people dying in hospital.

“About a third of all people who die in hospital have only one admission — the one in which they die,” the report’s authors wrote. “The average cost of that admission for those aged 50 and over is about $19,000.”

It’s easy to forget we have a choice

While some of us may want the full suite of medical options in our final days and hours, some of us want to avoid it at all costs. The thing we often forget is that we do have a choice.

Liz Callaghan, the chief executive of Palliative Care Australia, points out that while we go through an often exhaustive process of preparing for birth — going to classes, talking to our family, making a birth plan — when it comes to death there is little planning and very little conversation.

“We’re ignoring those conversations, and by ignoring them we’re leaving family and loved ones with no plan and no idea what we want at a very emotional and difficult time,” Ms Callaghan says.

The analogy with birth is a useful one because many of the same questions need to be considered:

  • Where would you prefer to be when you die?
  • What sort of medical care would you like?
  • What sort of interventions do you want to avoid?
  • Who would you like to have with you?

But there is another very important question to be considered for those facing the end of their life, and one that is less likely to apply to a birthing situation: who should speak for you when you cannot?

Planning ahead

This is where advance care plans and enduring guardianships become vitally important.

These documents are intended to inform family, friends and medical professionals of your wishes about the sort of medical care and interventions you want at the end of your life, and to authorise certain individuals to speak on your behalf and ensure those wishes are respected.

Their form varies somewhat across states and territories, but one constant is that they are legally binding. A doctor aware of an advance care directive but who acts against its instructions could face charges of assault.

Advance care plans ask a specific series of questions intended to make us think about what interventions we would want and under what conditions.

These documents can and do evolve over time: what we might want when we are still reasonably independent and of sound mind may be very different from what we might want when illness has narrowed our options and the few choices remaining may be intensive and largely futile.

For example, the NSW advance care plan for individuals in residential care asks questions such as “If my heart or breathing stops due to old age or irreversible (not curable) health problems my choice, if CPR is a treatment option, would be to a) please try to restart my heart or breathing (Attempt CPR), b) Please allow me to die a natural death. Do not try to restart my heart or breathing (NO CPR), or c) I cannot answer this question. Let my doctor decide.”

It also asks individuals to think about how acceptable, difficult, or unbearable their life would be if, for example, they couldn’t recognise family or loved ones; have to be fed through a tube in their stomach; or cannot talk, read or write.

It provides space for individuals to write about their specific request with respect to medical care and in particular, life-prolonging treatments they do not want to have.

Mr Smith’s mother had had these conversations with her family, and was very clear about her wishes.

“Mum had strict DNR [do not resuscitate] instructions, she didn’t want any kind of life support, she didn’t want unnatural prolonging of her life,” he says. “Even when she stopped eating near the end she wasn’t force-fed or anything.”

Have the piece of paper and the conversation

But Ms Callaghan says the true benefit of advance care plans lies not in the pieces of paper but in the conversations associated with them.

“If you have those conversations and discussions with your next of kin, they will be confident that whatever they decide on your behalf is what you want,” she says.

It’s no coincidence that an online initiative to provide families with a framework for a discussion around end-of-life choices is called The Conversation Project.

As a GP of 30 years in the Western Australian town of Mandurah, Frank Jones has had that conversation many, many times with his patients. It’s not always comfortable, but he knows how important it is.

“People don’t like talking about their own mortality,” says Dr Jones, also president of the Royal Australian College of General Practitioners. “But I think it’s really important as people do age that we initiate this conversation.”

While we might be a death-defying society on the whole, Dr Jones finds that the vast majority of individuals who have life-limiting illnesses with little hope of meaningful recovery are very happy to have the conversation with their doctor, and happy to work through the one-page explainer he gives them.

The bigger hurdle comes when he suggests they also discuss it with their families.

As effective as an advance care directive might be in getting individuals to decide how they would prefer to die, it’s useless unless it is shared and at least acknowledged by that individual’s loved ones; the people who will be responsible for acting on those wishes.

Directives often missed in hospital panic

An advance care directive is also useless if the medical staff working with that individual don’t know about it.

Unfortunately, advance care directives are often missed in the panic and chaos that happens when someone with a chronic life-limiting illness is taken to hospital.

“In the middle of the night, if that elderly person has a fall, and is whisked off by ambulance to the hospital, the hospital has no idea, unless the family’s involved and unless they know there’s an advance health directive in place,” Dr Jones says.

Unless a person is actually carrying the advance directive with them when they go to hospital, or someone at that hospital knows their wishes, there’s every chance that health care professionals will do what they’re best at — try to save a life by any means possible.

This is why enduring guardianships are almost as important as advance care plans, because they identify the person or people who are legally authorised to speak on your behalf and communicate your wishes.

Those documents may need to be produced to establish that right in a situation where difficult decisions are being made, but they are an important part of ensuring that someone’s end-of-life choices are heard and acted on.

Better infrastructure needed to support end-of-life choices

The other challenge for our health system and society is setting up the infrastructure needed to fully support people’s end-of-life choices, particularly if that choice involves dying at home.

Dr Hal Swerissen, co-author of the ‘Dying Well‘ report from the Grattan Institute, says Australia needs a competent, home-based palliative care system that can support and take the pressure off carers.

“It is a challenge but there are now some really good home-based palliative care services, such as Silver Chain,” Dr Swerissen says.

“They take all the referrals for palliative care in Perth — so they do a lot of deaths each year — and they get 60 per cent of people [referred to them] dying at home.”

As well as enabling so many to see out their final weeks and months of life at home, services such as Silver Chain could also prove to be cost-neutral to the health system.

Dr Swerissen and co-author Stephen Duckett estimated that home-based care for the last three months of life would cost an average of $6,000 per person. If 30 per cent of all deaths were to occur at home, this would amount to an extra $237 million cost to the health care system.

But if these individuals are dying at home, they are avoiding hospital and residential care facilities, which Dr Swerissen and Dr Duckett calculated as a potential $233 million cost saving.

Mr Smith’s mother had hoped to die at home, but the level of medical care she needed at the end of her life meant she spent her final weeks in a palliative care facility. It wasn’t her first choice, but Mr Smith says the level of care she and the family received was excellent.

“We took turns, my siblings and I, to stay all night with her. As much as she wasn’t at home, we were there.”

* Tony Smith has asked that his name be changed.

Complete Article HERE!

Cancer, Death and Finding the Words to Say Goodbye

BY Khevin Barnes

Cancer has a way of forcing us to consider the inevitable notion of our own death, and whether you want to think about that or not, I want to suggest that it need not be dramatic or discomforting if we choose to simply observe the phenomenon as something both mysterious and certain.

When a lifelong friend told me she had terminal, inoperable cancer I searched long and hard for the genuine and unpretentious words to say, knowing I had only one shot at getting it right. I’ll call her by her first name, Laura.

I hired Laura to work for me in an entertainment agency I started in California back in 1978. We were both in our late 20s. She was talented and fun and did a great comedy routine as “Mae West.” We lost touch over the years, but she reappeared again when my wife was diagnosed with advanced ovarian cancer, since they had both been good friends. She checked in often as I did my best to be a supportive and loving caregiver for my wife who, despite our best efforts, died at the age of 47 in 1997.

Those of us with a cancer diagnosis, no matter the stage or grade, know all too well that people die from our disease. The end of a life is something we experience with increased frequency as we get older, and also as we come to know more and more people like us with varying degrees of cancer. Of course, many of us live long and fulfilling lives.

I want to share some of the actual words Laura and I exchanged by letter in her final days with some short excerpts, not simply to show the remarkable courage and insight she expressed, but to act as a visible example of how a conversation with a dying friend might evolve. I recall the distress I felt at having to say goodbye in my letter, knowing it would be the last exchange I’d have with her.

I wanted very badly to avoid being trite or patronizing, but most of all, I wanted to be open and honest and to find the words to express the sadness I felt to lose her, along with the joy of living my life while knowing her. Laura wrote:

“I found out today that my cancer has now grown significantly in my liver, along with other areas. At this point my oncologist said that he did not know of any other options for me as far as treatment, and I most likely have three months to live. He has taken me off the chemo I was on and has now written an order for Hospice. I am sorry to give you this news.”

I sat with this news for a day before writing back to her:

“I received the news that your cancer has advanced beyond the treatable stage and I’m writing to tell you that I love you and that no matter where you are in the universe, you are now and always will be in my thoughts, memories and in my heart. I know from my past experience with my wife, that many who know and love you are muted by grief and there is a great difficulty to find words for such things.”

I reminded her of a few incidents from our past working as entertainers – things we had laughed over long ago. I spoke briefly about our philosophical views of death and dying.

“My own cancer experience, along with my wife’s, has forever altered how I view life and death, and though I feel a tremendous sadness that you may soon be in another place where perhaps we can no longer be in touch, those feelings are tempered by my unshakable belief that life – just as it is – is absolute perfection. I know from our conversations that in having a complete trust in life’s ultimate plan and purpose as we both do, there is a comfort we feel in this mystery that lies ahead for you and me and all of us. Of course, it’s those we leave behind who suffer – perhaps the most – but life, at least from my perspective, is always about growth, even though it hurts like hell at times.

And finally, though we both had accepted that there was no turning back, I wanted her to know that she would not be forgotten.

“Being human, I have that familiar ferocious desire to hold on to all we love. I know I can’t hold on to you my friend, but I can always keep you close to my heart. There is a place there just for you. And I will never let that go. I promise.”

Stephen Murphy-Shigematsu is a psychologist in the Stanford University School of Medicine. He said, “Saying goodbye is learning what to hold onto and what to let go of. I firmly believe that by embracing our mortality with full awareness we can learn to experience life in a deeper and more passionate way. But the internal work of saying goodbye means finding a way to acknowledge that people come and go in our lives, leaving permanent imprints in our character; we inherit traits from everybody who crosses our paths or touches our hearts.”

Laura died five weeks after we exchanged our letters. Others in my life will die, too. And then one day of course, it will be my turn. And the only thing I know with any certainty is that these goodbyes are sure to repeat time and time again, until one day, that last goodbye will be the one reserved for me.

Complete Article ↪HERE↩!

How to sit with someone who’s dying

Don’t feel you have to hold back your emotions during this time.

By Carol Rääbus and Roisin McCann

When his grandfather died in the emergency department of a Hobart hospital, Andreas was by his side.

“I was really frightened.”

It was Andreas’s first experience of being with a dying person and it made him anxious.

“As his breathing slowed down and he was taking less and less breaths, I was worried about how I was going to feel when he didn’t take any more,” he says.

“And then he had one final really deep inhale and exhale, and it was fine.

“I wasn’t panicked at all. I thought ‘Oh, it’s not weird’.

“Death isn’t weird at all, really. It’s quite normal and kind of OK.”

The idea of sitting with someone who’s dying, particularly when they’re someone you care about, is something many of us find overwhelming.

What’s going to happen? Should you talk about the football? Ask them what they want at their funeral? How you can make granddad feel more comfortable?

We asked a range of people, who regularly spend time with those who are at the end of their lives, to share what they’ve learnt about being with someone who’s dying.

When should I visit someone in hospital or hospice?

Hospice volunteer Debra Reeves says her first bit of advice is to find out when you’re allowed to visit a hospital ward or facility.

Hospital wards often have compulsory quiet hours when no-one is allowed to visit, and those hours are often different from ward to ward in the same hospital.

Check in with a nurse, or someone who’s been there a while, to find out if the person you want to see is up for visitors. The same goes for visiting someone in their own home — always check if it’s a good time for you to be there.

Should I bring food, photos or mementos?

Again, check first. Ask what the rules are at the facility beforehand, or ask the person whose home it is.

Smells can be strongly linked to memories, so if you know your grandma, for example, always loved the smell of roses, take them in.

End of Life Doula Leigh Connell recommends not wearing strong perfumes as they can be overwhelming.

Bringing food is often one of the first things we think of as a way of comforting someone. Depending on the situation, the person might not be able to eat something you bring, but the gesture can still be appreciated.

“If you know they like the smell of mandarins, take mandarins, even if they don’t get to eat them,” Leigh says.

Meaningful photos and items can be comforting for the person, but don’t take in too many things and make clutter.

What should I say?

Spending time with a dying loved one can be scary, but worth it for them and you.

Not knowing what to say is one thing many people in this situation worry about.

Those who spend a lot of time with the dying all tend to say the same thing — you don’t need to say anything.

“Don’t say a lot. Let them talk,” Maria Pate from Hospice Volunteers says.

“Or let the silence be there.”

Launceston priest Father Mark Freeman says often simply being in the room can be enough comfort for the person.

“Often that presence is a reassurance to them that things are all OK,” he says.

If being silent and still is difficult, you could take something with you to keep yourself busy.

Leigh’s suggestion is to try something you know the person liked doing — playing cards or knitting. Even if you’re not good at the activity, it can make a connection.

Andreas’s advice is to be open and admit you’re scared.

“If you’re not comfortable talking to someone who has a terminal diagnosis, maybe just say, ‘I’m having trouble with this’,” he says.

Should I hug them if they look frail?

Giving a loved one a hug is often the quickest way to let them know you care.

But if you’ve never hugged your uncle before, don’t feel you have to.

Though it can be intimidating when someone is particularly frail, a gentle touch of the hand can bring a lot of peace.

Gentle touch, like holding a hand, can be enough to let someone know you’re there and you care.

Maria recommends a very gentle hand massage as a way of making connection and comforting someone.

Father Mark agrees.

“This lady was fairly well out of it, I went to talk to her, [took her hand] and she opened her eyes and looked at me — and had never met me before — and said, ‘Oh Father, thanks for coming’,” he says.

Again, it’s a good idea to ask for permission before touching someone. They might not be in the mood, or might be experiencing pain and not want any touch.

I think they’re dying now. What do I do?

Until you’ve gone through it, none us really know how we will react if we’re there at the time someone’s life ends.

Father Mark’s advice to families he visits is to “embrace the reality” of what’s happening and allow themselves to feel.

“They don’t have to panic [about the fact] that they just want to cry, or they’re so frustrated and they’re sad and hurt, and angry even,” he says.

“All those things can be a part of it.”

Father Mark says he encourages families to stay in the room if possible and be a part of what’s happening. Often what’s happening is not much at all.

Debra was with a family in an aged care facility when their loved one was dying.

“They went straight into storytelling,” she says.

“He was already unconscious. His fingers were already turning black.

“They held vigil, they talked around the bed. They used his name a lot and they talked to him.

“They gave him the most beautiful farewell. It was lovely.”

No-one is dying yet. But can I be prepared when it comes?

Sometimes we don’t get any opportunities to sit with someone before they die — death can sometimes come when no-one is expecting it or ready for it.

Spending time with strangers who are dying has given our interviewees a sense of wanting to make sure they and their families are as ready as possible for that moment.

Their advice is to think ahead now.

“I’m going to make that advanced care directive, I’m going to write that will,” Debra says.

“And I’m going to resolve those relationships so that when I am on my deathbed, I’m at peace. And my family can be at peace as well.”

Complete Article HERE!

How to Die

As a psychotherapist, Irvin Yalom has helped others grapple with their mortality. Now he is preparing for his own end.

By

One morning in May, the existential psychotherapist Irvin Yalom was recuperating in a sunny room on the first floor of a Palo Alto convalescent hospital. He was dressed in white pants and a green sweater, not a hospital gown, and was quick to point out that he is not normally confined to a medical facility. “I don’t want [this article] to scare my patients,” he said, laughing. Until a knee surgery the previous month, he had been seeing two or three patients a day, some at his office in San Francisco and others in Palo Alto, where he lives. Following the procedure, however, he felt dizzy and had difficulty concentrating. “They think it’s a brain issue, but they don’t know exactly what it is,” he told me in a soft, gravelly voice. He was nonetheless hopeful that he would soon head home; he would be turning 86 in June and was looking forward to the release of his memoir, Becoming Myself, in October.

Issues of The Times Literary Supplement and The New York Times Book Review sat on the bed, alongside an iPad. Yalom had been spending his stay watching Woody Allen movies and reading novels by the Canadian writer Robertson Davies. For someone who helped introduce to American psychological circles the idea that a person’s conflicts can result from unresolvable dilemmas of human existence, among them the dread of dying, he spoke easily about his own mortality.

“I haven’t been overwhelmed by fear,” he said of his unfolding health scare. Another of Yalom’s signature ideas, expressed in books such as Staring at the Sun and Creatures of a Day, is that we can lessen our fear of dying by living a regret-free life, meditating on our effect on subsequent generations, and confiding in loved ones about our death anxiety. When I asked whether his lifelong preoccupation with death eases the prospect that he might pass away soon, he replied, “I think it probably makes things easier.”

The hope that our existential fears can be diminished inspires people around the world to email Yalom daily. In a Gmail folder labeled “Fans,” he had saved 4,197 messages from admirers in places ranging from Iran to Croatia to South Korea, which he invited me to look at. Some were simply thank-you notes, expressions of gratitude for the insights delivered by his books. In addition to textbooks and other works of nonfiction, he has written several novels and story collections. Some, such as Love’s Executioner & Other Tales of Psychotherapy and When Nietzsche Wept, have been best sellers.

As I scrolled through the emails, Yalom used his cane to tap a button that alerted the nurses’ station. A voice came through the intercom, and he explained that he needed some ice for his knee. It was the third time he’d called; he told me his pain was making it difficult to concentrate on anything else, though he was trying. Throughout his stay, his wife of more than 60 years, Marilyn, had been stopping by regularly to refresh his reading material. The day before, he’d had a visit from Georgia May, the widow of the existential psychotherapist Rollo May, who was a colleague and friend of Yalom’s. When he runs out of other things to do, he plays on his iPad or his computer, using them with the dexterity of someone half his age.

Many of Yalom’s fan letters are searing meditations on death. Some correspondents hope he will offer relief from deep-seated problems. Most of the time he suggests that they find a local therapist, but if one isn’t available and the issue seems solvable in a swift period—at this point in his career, he won’t work with patients for longer than a year—he may take someone on remotely. He is currently working with people in Turkey, South Africa, and Australia via the internet. Obvious cultural distinctions aside, he says his foreign patients are not that different from the patients he treats in person. “If we live a life full of regret, full of things we haven’t done, if we’ve lived an unfulfilled life,” he says, “when death comes along, it’s a lot worse. I think it’s true for all of us.”

Becoming Myself is clearly the memoir of a psychiatrist. “I awake from my dream at 3 a.m., weeping into my pillow,” reads the opening line. Yalom’s nightmare involves a childhood incident in which he insulted a girl. Much of the book is about the influence that his youth—particularly his relationship with his mother—has had on his life. He writes, quoting Charles Dickens, “For, as I draw closer and closer to the end, I travel in the circle, nearer and nearer to the beginning.”

Yalom first gained fame among psychotherapists for The Theory and Practice of Group Psychotherapy. The book, published in 1970, argues that the dynamic in group therapy is a microcosm of everyday life, and that addressing relationships within a therapy group could have profound therapeutic benefits outside of it. “I’ll do the sixth revision next year,” he told me, as nurses came in and out of the room. He was sitting in a chair by the window, fidgeting. Without his signature panama hat, his sideburns, which skate away from his ears, looked especially long.

Although he gave up teaching years ago, Yalom says that until he is no longer capable, he’ll continue seeing patients in the cottage in his backyard. It is a shrink’s version of a man cave, lined with books by Friedrich Nietzsche and the Stoic philosophers. The garden outside features Japanese bonsai trees; deer, rabbits, and foxes make occasional appearances nearby. “When I feel restless, I step outside and putter over the bonsai, pruning, watering, and admiring their graceful shapes,” he writes in Becoming Myself.

Yalom sees each problem encountered in therapy as something of a puzzle, one he and his patient must work together to solve. He described this dynamic in Love’s Executioner, which consists of 10 stories of patients undergoing therapy—true tales from Yalom’s work, with names changed but few other details altered. The stories concentrate not only on Yalom’s suffering patients but also on his own feelings and thoughts as a therapist. “I wanted to rehumanize therapy, to show the therapist as a real person,” he told me.

That might not sound like the stuff of potboilers, but the book, which came out in 1989, was a commercial hit, and continues to sell briskly today. In 2003, the critic Laura Miller credited it with inaugurating a new genre. Love’s Executioner, she wrote in The New York Times, had shown “that the psychological case study could give readers what the short fiction of the time increasingly refused to deliver: the pursuit of secrets, intrigue, big emotions, plot.”

Today, the people around the world who email Yalom know him mostly from his writing, which has been translated into dozens of languages. Like David Hasselhoff, he may well be more of a star outside the United States than at home. This likely reflects American readers’ religiosity and insistence on happy endings. Mondays with Yalom are not Tuesdays With Morrie. Yalom can be morbid, and he doesn’t believe in an afterlife; he says his anxiety about death is soothed somewhat by the belief that what follows life will be the same as what preceded it. Not surprisingly, he told me, highly religious readers don’t tend to gravitate toward his books.

Yalom is candid, both in his memoir and in person, about the difficulties of aging. When two of his close friends died recently, he realized that his cherished memory of their friendship is all that remains. “It dawned on me that that reality doesn’t exist anymore,” he said sadly. “When I die, it will be gone.” The thought of leaving Marilyn behind is agonizing. But he also dreads further physical deterioration. He now uses a walker with tennis balls on the bottoms of the legs, and he has recently lost weight. He coughed frequently during our meeting; when I emailed him a month later, he was feeling better, but said of his health scare, “I consider those few weeks as among the very worst of my life.” He can no longer play tennis or go scuba diving, and he fears he might have to stop bicycling. “Getting old,” he writes in ​Becoming Myself, “is giving up one damn thing after another.”

In his books, Yalom emphasizes that love can reduce death anxiety, both by providing a space for people to share their fears and by contributing to a well-lived life. Marilyn, an accomplished feminist literary scholar with whom he has a close intellectual partnership, inspires him to keep living every bit as much as she makes the idea of dying excruciating. “My wife matches me book for book,” he told me at one point. But although Yalom’s email account has a folder titled “Ideas for Writing,” he said he may finally be out of book ideas. Meanwhile, Marilyn told me that she had recently helped a friend, a Stanford professor’s wife, write an obituary for her own husband.* “This is the reality of where we are in life,” she said.

Early in Yalom’s existential-psychotherapy practice, he was struck by how much comfort people derived from exploring their existential fears. “Dying,” he wrote in Staring at the Sun, “is lonely, the loneliest event of life.” Yet empathy and connectedness can go a long way toward reducing our anxieties about mortality. When, in the 1970s, Yalom began working with patients diagnosed with untreatable cancer, he found they were sometimes heartened by the idea that, by dying with dignity, they could be an example to others.

Death terror can occur in anyone at any time, and can have life-changing effects, both negative and positive. “Even for those with a deeply ingrained block against openness—those who have always avoided deep friendships—the idea of death may be an awakening experience, catalyzing an enormous shift in their desire for intimacy,” Yalom has written. Those who haven’t yet lived the life they wanted to can still shift their priorities late in life. “The same thing was true with Ebenezer Scrooge,” he told me, as a nurse brought him three pills.

For all the morbidity of existential psychotherapy, it is deeply life-affirming. Change is always possible. Intimacy can be freeing. Existence is precious. “I hate the idea of leaving this world, this wonderful life,” Yalom said, praising a metaphor devised by the scientist Richard Dawkins to illustrate the fleeting nature of existence. Imagine that the present moment is a spotlight moving its way across a ruler that shows the billions of years the universe has been around. Everything to the left of the area lit by the spotlight is over; to the right is the uncertain future. The chances of us being in the spotlight at this particular moment—of being alive—are minuscule. And yet here we are.

Yalom’s apprehension about death is allayed by his sense that he has lived well. “As I look back at my life, I have been an overachiever, and I have few regrets,” he said quietly. Still, he continued, people have “an inbuilt impulse to want to survive, to live.” He paused. “I hate to see life go.”

Complete Article HERE!

Orca who carried her dead infant is not alone – many animals grieve

The orca has been seen carrying the dead infant since July

By Michael Marshall

Over the last few weeks, many people have been deeply moved by the story of a female orca who spent over a fortnight swimming with the dead body of her calf, apparently grieving. The story is a dramatic illustration of something that has become increasingly clear in recent years: many animals grieve for their dead.

The orca is called Tahlequah and belongs to a pod known as J, which roams the north-east Pacific Ocean. Her baby died shortly after it was born on 24 July, according to the Center for Whale Research in Friday Harbor, Washington.

Tahlequah proceeded to carry the body for at least 17 days, during which time she covered 1600 kilometres. On Saturday 11 August, the Center reported that she was no longer carrying the body. Instead she joined her fellow pod members in chasing a school of salmon, and seemed “remarkably frisky”.

Among certain kinds of animal, such grieving behaviours appear to be quite common.

Living together

Grief seems to be most common in highly social animals that live in tight-knit groups. This makes sense: social animals would come to value their friends and family, and accordingly would feel a loss when they die. In contrast, animals that live solitary lives and do not care for their offspring would have nobody to grieve.

Orcas fit the bill: being a kind of dolphin, they are highly intelligent and live in groups. Indeed, there have been previous instances where orca mothers were seen carrying the bodies of their dead infants. The same is true of many other cetaceans, the group to which orcas belong and which also includes other dolphins and whales. Bottlenose dolphins have been seen lifting the corpses of their fellows above water, as if trying to help them breathe.

There is also growing evidence that African elephants grieve. They pay particular attention to the bones of elephants, compared to bones of other species, and become agitated if they come across an elephant’s corpse.

Perhaps more surprisingly, pig-like animals called peccaries have also been observed seemingly grieving for a dead group member. A 2017 study tracked a herd of peccaries after one of their number died and found that they visited her body repeatedly, generally either alone or in pairs. The peccaries sometimes simply stood nearby, and at other times they nuzzled the body, tried to pick it up and even slept next to it.

Monkeys like us

Some of the most extensive evidence for animal grief comes from primates like monkeys and apes: our closest living relatives.

In one remarkable incident, a female snub-nosed monkey fell from a tree and cracked her head on a rock. Her partner, the alpha male of the group, sat with her and gently touched her. After she died he spent a further five minutes with her, pulling gently at her hand as if trying to revive her, before leaving. His behaviour suggests that he understood something of the finality of death.

Chimpanzees have been seen carrying the corpses of dead infants, often for weeks. In one instance, a captive chimp called Pansy died, after which her fellow troupe members first cleaned her corpse, and then avoided the place where it lay. This behaviour resembles a funeral ritual.

Grieving does not seem to be universal among primates, but this may have to do with the environments in which they live. In hot and wet regions, corpses decay and become unpleasant very quickly, forcing the animals to abandon them. In contrast, monkeys called geladas live in cold places where decay is slow, and have been observed carrying corpses for up to 48 days.

And animal grief can take surprising turns. In some instances, apes have stopped carrying the corpses of dead infants – and eaten them instead. Such cannibalism seems to be moderately common in chimpanzees, but rare in bonobos, gorillas and orang-utans.

Complete Article HERE!

Palliative care for the living — more education is needed

A pregnant mother’s 20-week ultrasound often brings feelings of elation and anticipation as she learns the baby’s sex or sees the baby move in her belly.

But when that ultrasound shows a heart defect in her unborn child that will require multiple surgeries and could cause learning difficulties, necessitate a heart transplant, or even lead to an early death, everything changes for her and for her family. Expectations of the future start to change.

Children with complicated medical problems such as heart defects, severe seizure disorders or cancer need care from multiple specialists over their lifetime. As specialists in pediatric cardiology and pediatric intensive care medicine, we have seen too often that one key group — the palliative care team — is often not included.

One reason for this is that many people inaccurately think of palliative care as only care for the dying.

The National Consensus Project for Quality Palliative Care describes palliative care as an interdisciplinary approach to “patient and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering.” There is no mention of dying, death or end-of-life care.

Important legislation under consideration now seeks to expand opportunities for interdisciplinary education, training and research in palliative care. The Palliative Care and Hospice Education and Training Act recently passed the U.S. House of Representatives and is headed to the Senate. This legislation will support educational efforts that inform patients and health-care providers about the benefits of palliative care in supporting individuals with serious illness.

People with complicated medical problems and serious illness need medical specialists. Just as heart doctors treat heart problems and lung doctors treat lung problems, palliative care treats the suffering that results from serious illness.

Sometimes the reasons for suffering are obvious, as with a cancer patient’s excruciating bone pain or unending nausea. Palliative care providers use both medications and less conventional treatments, such as acupuncture or music therapy, to alleviate difficult-to-control symptoms.

Other times, suffering from serious illness can’t be seen easily. A new study published in BMJ (originally the British Medical Journal) found that 20 percent of patients with cancer have depression and 10 percent have anxiety. Often unnoticed or sometimes ignored, these complications can decrease survival.

To be sure, suffering comes in many forms – physical, emotional, spiritual. Many contend that physicians should focus on things such as physical bodily pain, and leave more existential suffering to chaplains or other religious figures. That is why palliative care requires an interdisciplinary team that includes social workers, chaplains, music and art therapists, nurses, physicians and others.

But palliative care providers can only help if they are invited to participate. Some physicians and parents may avoid introducing palliative care because they feel it is tantamount to “giving up hope.”

Yet, in some cases, palliative care may help extend life. In a study in China of adults with metastatic non–small-cell lung cancer, those who received early palliative care lived longer than those who received standard cancer care.

Such improved outcomes are not limited to the patients themselves. A new study published in Cardiology in the Young showed that mothers of children with a serious congenital heart defect (called hypoplastic left heart syndrome) who received early palliative care had less anxiety and improved family relationships compared to mothers who received regular care.

While some physicians may resist involving palliative care, many patients report they are open to the idea. A recent study of oncology patients published in the Journal of American Medical Association network showed, “very few patients or parents in this study expressed negative attitudes toward early palliative care.”

Of course, many patients with serious illness may not need palliative care. Some health-care providers might want to manage all aspects of their patients’ care. Certainly, all physician should have skills to treat difficult symptoms, address emotional challenges, and conduct difficult conversations. But as decision making and suffering become more and more complicated, involving clinicians with specific expertise can make a huge difference.

Unfortunately, access to quality palliative care services is lacking. One-third, or 802 U.S. hospitals with 50 or more beds, report no palliative care services. The Center to Advance Palliative Care gave one-third of states a grade of C or D based on inadequate access to palliative care.

To improve access to palliative care, more health-care providers need this training. According to the data from the National Palliative Care Registry, 1 to 1.8 million patients who could benefit from palliative care services, are not receiving it.

Just 140 existing palliative care training programs graduate only 360 physicians yearly. This is nowhere near enough providers to meet this massive unmet need. And one study published in Palliative Medicine shows that the need will double by 2040.

Fortunately, clinicians and families don’t need to participate in formal training programs to access palliative care education. The National Institutes of Health has a campaign to improve understanding for both patients and providers.

The American Academy of Hospice and Palliative Medicine website provides links to research, videos, training options, and more. The Center to AdvancePalliative Care provides tools, training, and technical assistance to build and sustain palliative care in all health care settings.

Palliative care must not be an afterthought, or a consideration after all other possibilities in care are exhausted. It is urgent that palliative care be accessible to everyone regardless of age at the onset of medical treatment. That way patients can be offered the best possible care and outcomes.

Complete Article HERE!

Does facing death teach us how to live a richer life?

“I’m a lot more compassionate now compared to what I was, and I’m softer in my approach.”

By Dilvin Yasa

In her lengthy career as a palliative care nurse, Elizabeth Barton has seen it all. From the guys who buy brand-new sports cars mere days before they die – “Just so they can say they had one” – to the long-lost relationships rekindled on deathbeds, little surprises her about the way we “do” death any more.

“Everyone’s different; those who have faith don’t appear to fear death as much and, of course, many speak of regrets,” says Barton. “But if there’s one thing that remains consistent about the final journey people make towards death, it’s that it’s always characteristic of the way they lived life.”

While many of us would rather not think about the reality that one day it will be our turn to be tapped on the shoulder (the fact that almost 50 per cent of Australians die intestate – that is, without a will – points to our avoidance), there is much that death and dying can teach us about living well, says Barton.

“It’s a time when people realise that the thing they value most is their human relationships. The most common lament I hear is how they wished they’d focused on spending more time with people. I’ve yet to hear a single person say, ‘Gee, I wish I’d put in more overtime at the office.’ It’s a message worth remembering while you’re still fit and healthy.”

“I FEEL LOVED EVERY SINGLE DAY”
Keely Bennett is a 43-year-old mother of two young daughters (aged nine and seven) who is battling stage-four metastatic breast cancer. In 2011, she was given two months to live.

Keely Bennett is a 43-year-old mother of two young daughters.

“The cancer had already spread all over my body – from my liver and lungs to my spine, collar bone and pelvis – by the time they found it in 2011. I was still on maternity leave with our youngest daughter so, like most mums looking after babies, I’d found ways to explain away the fatigue, breast tenderness and back pain I’d been feeling. When the nausea began, I thought it was an indication that our longed-for third baby was on its way, but nothing could have prepared me for the truth. My prognosis was two months – tops.

After 18 months we realised my battle might not end as quickly as doctors had initially anticipated. Among other issues I had chemo, an operation for brain lesions, a total hip replacement, a battle with a flesh-eating disease and radiation for a hip fracture. I didn’t have time to dwell too deeply on what my prognosis actually meant. Will-making took some encouragement by my oncology psychologist because I felt that by writing one, I was admitting defeat. I was not – and am not – ready to die.

The hardest part of living with a terminal illness is trying to find balance between being present here, today, with my family, but also planning for a future where I can no longer be by their side. I have to make the assumption that I won’t see my girls grow up, so it’s about asking myself on a daily basis, ‘Do I write them letters now for their 18th birthdays, or just go out with them and play?’

The cancer keeps finding new ways to come back, so treatment often feels like we’re playing whack-a-mole to buy extra time, but I’m focused on living today very, very well. Last year, we made a trip to Iceland, my bucket-list destination, and we’ve also taken the girls to Europe and to Disneyland. They were things we always planned to do ‘one day’, but now I know ‘one day’ doesn’t happen for everybody.

Obviously I’d change everything in a heartbeat to not have cancer, but knowing my time is limited has given me a gratitude and appreciation for what’s truly important in life. When healthy, many of us dream of a bigger house or a nicer car, but when you’re battling to live, you realise that the only thing that’s worth anything is love.

You work on your relationships, you make an effort to see more of your friends and family, and you become acutely aware of what you feel for others. More than that, you get insight into what others feel for you. I’ve always known I was loved, but now I hear it, see it and feel it every day. Yes, it’s unfortunate that this is often what it takes for people to freely say ‘I love you’, but what a joy to be able to hear and experience it.”

“FEAR CAN BE REDIRECTED”
Broadcaster and journalist Julie McCrossin, 63, was diagnosed with stage-four oropharyngeal cancer in 2013. Having celebrated five years of recovery, she’s taking the fight to a larger audience.

Broadcaster and journalist Julie McCrossin, 63.

“I faced the possibility of death head-on from day one – probably because my radiation oncologist said, ‘Julie, I expect you to live, but I won’t be surprised if you die.’ I respected him for that, but it still didn’t make my oropharyngeal cancer diagnosis any easier. What did was when he followed with, ‘Look, you’re in with a good chance – and you have a good support network.’ I looked over at my partner Melissa crying next to me and realised, ‘Yes, I may die, but I have to do everything I possibly can to stay alive.’

I felt I was engaged in a battle of survival, and what helped me get through it was thinking about my father, Robert, who was a World War II bomber pilot. I found radiotherapy devastatingly challenging, so I would focus on the fact my father survived 30 tours of duty in a position which had a very high death rate. By chance, I had 30 sessions of radiotherapy.

Once you’ve been touched by death, you’re never truly the same person again. I’ve just celebrated the five-year anniversary of my recovery, but the fear of recurrence continues. To counteract that, I’ve become heavily involved with patient advocacy, which has been a deeply positive experience. It calms me and brings me joy in ways I never could have imagined.

My battle with cancer has taught me that life is precious beyond words, and you’ll do anything to be able to stay and enjoy it for a little longer.”

Julie is an ambassador for Beyond Five – Targeting Cancer and TROG Cancer Research, and hosts the Cancer Council NSW podcast series The Thing About Cancer, which can be found at cancercouncil.com.au/podcasts. For more information about cancer, visit cancercouncil.com.au.

“I’VE LEARNT THAT JOY CAN COME WITH FORGIVENESS”

Irene Hellas, 46, lost her partner George to suicide in 2012, prompting a long period of soul-searching. She now works with Suicide Prevention Australia.

Irene Hellas, 46.

“Ten days before George took his own life, he began a period of what he called ‘spring cleaning’. It started with a furious reorganisation of his paperwork and finances, and ended with phone calls to family and friends to offload some of his most prized possessions. Looking back now, I realise he was getting his affairs in order before he went, but although I was rattled at the time, I just didn’t know how to ask the question, ‘Are you okay?’

When I went to his house and he didn’t open the door, it couldn’t have occurred to me what was on the other side. George had never shown any sign of mental illness. His death, and the way in which he went, derailed all of us.

My dreams died with George that night. We had planned to get married and start a family, but suddenly I was alone. I was angry at life, angry at myself and angry at George for leaving me. I began retreating inward and letting my feelings consume my life, so when a friend insisted I seek help, I reluctantly agreed.

I began working one-on-one with a psychologist, attended seminars, had some life coaching and read books like This Is How We Grow, by Dr Christina Hibbert. There’s a line in that book which quickly became my personal motto: “When life throws you in the mud, plant yourself and grow.”

It was a five-year period of soul-searching before I realised that all the signs were pointing to forgiveness and finding a new purpose. Once I was able to forgive George for what he had done to me by leaving the way he did, the release everyone said would eventually happen occurred. I began to feel a strong gratitude for George and the gift he had given me by being in my life for as long as he was.

Before George’s death, I had a lot of masculine energy; I was harsh and didn’t demonstrate empathy towards others the way I could have. I’m a lot more compassionate now compared to what I was. I’m softer in my approach, in touch with my feelings, and I stress a lot less about the things I know don’t really matter.

George’s death had me questioning my purpose for a long time, but ultimately I’ve found it. I now volunteer regularly, and I’m dedicated to working with Suicide Prevention Australia to help raise awareness that most suicides are preventable. Joy, I now know, is looking outward, contributing to society and helping others, and true joy can only ever start with self-love.”

Irene is a member of Suicide Prevention Australia’s Lived Experience Network. Visit suicidepreventionaust.org to find out how to get involved and access a comprehensive list of support services.

Complete Article HERE!