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 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!

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!

Meet the ‘end-of-life doulas’ guiding people to their death

By Emily Ford

Lizzie Neville is an ‘end-of-life doula’ who helps people prepare for death.

Doula is a term traditionally associated with childbirth, describing someone who helps a woman before, during or after childbirth.

But ‘death doula’ Lizzie, from Alton, Hampshire, was hired by Lowri Rylance, from Basingstoke, when her husband was diagnosed with terminal brain cancer.

We took a snapshot of the last year of people’s lives – here’s what we found

By

Sorry to be the bearer of bad news – sooner or later, we’ll all reach the end of our lives. Many of us are not keen to face this event, nor the time that comes directly before. It’s actually hard to say what is the bigger taboo, death or the personal care that most of us receive in our final days and weeks.

According to the Health Organisation, more than half of us die of an illness that requires some form of end of life care. Depending on your definitions, the figure can be much higher – a German study found it to be more like four out of five, which is in line with findings from my work in Scotland. Either way, care providers expect the absolute numbers of people in Western countries in need of end of life care to keep growing as populations continue to grow older in future.

As you might expect, older people have a higher chance of developing ailments that need care. The group of those experiencing a long period of dwindling physical and mental faculties due to frail old age or dementia is already rising: according to the death records that we examined in Scotland, for example, it doubled from 5.1% in 2001-02 to 9.7% in 2011-12, and dementia rates have continued to increase. The share of people undergoing shorter periods of decline, such as cancer patients, rose to 29.5% of all deaths in 2011-12. These numbers are slightly higher than many other countries, but roughly comparable.

Given these figures, you may wonder: what is life like at its end? Do people receive the care and support they need? The answer is, not everyone does. My colleague Iain Atherton and I mapped the last year of people’s lives in Scotland using a mixture of census data NHS data, and death records. Here’s what we found out.

Deprivation and being alone

We looked at all 53,517 people who died in Scotland within a year of the last census in 2011. About one in five were below pension age, half were aged 65-84, and just under a third were 85 or older. Every third person lived alone, and around 40% were widowed. Not the ideal situation when you need care.

The closer people were to dying, the more likely they were to have moved in with others. This varied by neighbourhood deprivation, however. In more deprived areas, 37% of people aged 70 and over – those most likely to need care – still lived alone, even in the last four weeks of their lives. In the least deprived areas, the rate was 25%. (In this age group as a whole, 18% of people died in a care home.)

To my knowledge, nobody has come up with directly comparable figures for other countries. From Eurostat data from 2014, though, we do know that 32% of over-65s in the EU live alone, for example, and that the UK is almost exactly in line with the average.

Let’s be honest: few people find the idea of living alone in old age appealing, no matter what their health status. In many cases, it goes hand-in-hand with depending on external services for care – strangers that invade the innermost sphere of your privacy. It’s probably one of the major reasons why people don’t like talking about this stage of life.

Consider new options

Yet if we want to make our last months and years of life less bleak, talking and acting is exactly what we need to do. As I have just discussed at a show at the Edinburgh Fringe on the subject, we should consider new options. We need to think outside the box, and ensure that we are the decision makers instead of being pushed back into the role of dependent.

Are retirement villages an option, for example? Or better still, housing complexes with people from different generations, where even a frail grandad can help the neighbour’s boy with his homework and still feel part of the community? Or can you band together with some friends, either in one house or in adjacent flats?

Bicep building.

In many cases, care decisions are made ad hoc, because an immediate solution is required. When your mother has had yet another fall and it’s clear she can no longer stay on her own and needs a care home bed in two days when she comes out of the hospital, there is no time to find the best home for her. You must take the place that is available.

Isn’t it funny that many of us tend to take out life insurance in case we die prematurely but don’t make provisions for the very likely possibility that we’ll need care? I doubt you look forward to your care home stay, the tightly scheduled visit of the district nurse, or the look on the face of your children when they need to decide whether they want to sell the house they grew up in to pay for better care for you.

Rich or poor, man or woman, the clock is ticking for all of us. Too many older people are facing the most vulnerable stage in their adult lives alone, and the next generation needs to find ways of avoiding this situation. It’s not to say that governments and healthcare providers shouldn’t take responsibility for care – they do anyway – but if we blindly rely on them to provide, there are limits to what we will receive. Before it’s too late, it’s better that we also come up with plans of our own.

Complete Article HERE!

Death doulas explain why everyone should have an end-of-life plan

Death doula Carmen Barnsley thinks people should talk more about death and be more informed about their options.

By Nicole Mills

A new breed of doulas are helping break down the fear around death, which they say shouldn’t be a confronting word.

Carmen Barnsley from Melbourne said just like birth doulas, death doulas were there to provide support, knowledge and assistance during times of upheaval and uncertainty.

“I find it is just a privilege and a humbling experience to be where life enters this world and when life leaves it,” the former nurse said.

“Death is just as amazing an experience as birth is, but we celebrate birth and we deny death.”

Ms Barnsley has had her own experience with death. Her son died when he was five months old.

While she was in the depths of numbing grief, the hospital handed over a Yellow Pages and told her and her husband they needed to pick a funeral parlour.

It was the first of many conversations she had during the grieving process that made her realise that as a society, we need to start doing death better.

“Some cultures do death beautifully. It’s a reflection of the person’s life, whereas I think we do it pretty poorly,” she said.

“The honest thing I can say about the doulas in my network is everyone has been through a personal process of death.

“A lot of the doulas who are coming from personal experiences are coming from terrible personal experiences and were seeking answers to improve it so that doesn’t happen to another person again.”

Emotions run high

Ms Barnsley said her colleagues came from all walks of life, having worked as hospital chaplains, accountants, social workers, celebrants and in the funeral industry.

She wants people to understand that knowledge is power, especially when it comes to death.

“A death doula isn’t about dying, it’s about allowing that individual to live until they die.

“I find when somebody puts a plan in place they will then live until they die, as ironic as that sounds.”

She recommends having conversations about death when you’re young and healthy instead of leaving it until death approaches when emotions run high.

“In the medical profession we have informed consent. I’d love for end-of-life issues to have informed choices.

“I don’t have a terminal disease but I have an advanced life care directive in place.

“My doctor has got a copy; this is probably a little bit touchy at the moment, but mine is actually up on the [My Health Record] healthcare site … so that any hospital in Australia can access my directive.”

The dying space

The main thing Ms Barnsley wants people to know is that death doesn’t have to be impersonal and there is no prescribed process to follow.

“You don’t need a funeral home, and some people don’t even know that,” she said.

“You may need to get one to transport someone, but you can have a loved one at home, you can organise transport straight to burial or cremation or whatever the person’s choice is.

“[In the past] a family did care for loved ones dying; it wasn’t in a hospital, it wasn’t medicalised, it wasn’t institutionalised and that was the norm.

“But there became a fear factor with death; let’s take it behind closed doors, we don’t talk about it, and there’s still people within our community that still have that.”

Melbourne death doula Bonita Ralph says talking about death is important.

Bonita Ralph first came into contact with doulas when she was pregnant with her first child.

Years later she read an article about the work of death doulas and realised it was a similar concept.

“For me it was a very lightbulb moment where I went, ‘Oh my God, of course that’s the same thing’,” she said.

“It’s the same sort of energy, the birthing space and the dying space.”

Ms Ralph comes from a community welfare and social justice background and sees the work of a death doula as an “in-between role” to help bridge the gap between the medical system and the community.

“I think a lot of people think that when you’re a doula, you’re sitting at the bedside of someone who is dying, and that hasn’t been my experience yet,” she said.

“I think that may come, it may not, and that’s OK because I think the doula role, for me, is broader than that.

“A doula is a companion, someone to walk with you, someone to support you in your choices and that absolutely applies to end-of-life care and death.”

Know your choices

Ms Ralph said one of the best things people could do was spend time reflecting on their own experience with death and understand where their knowledge about death comes from.

“I think we’re moving really slowly towards acknowledging that if we don’t have role models and experiences, then we actually don’t know what to do,” she said.

“They need to know that it’s not illegal to take someone who has died home. It’s not illegal to organise your own funeral. You don’t need a funeral director. It’s a lot of work and maybe I wouldn’t suggest it; logistically it’s tricky, but it’s not impossible.

“People do dig their own graves, the graves of family members. That is not impossible. There are options out there.”

Ms Ralph said these options would not be for everyone, and while Australia was blessed to have a good medical system, it was important to know your choices.

“I don’t want people to feel like they’re being forced or that there’s a right or wrong way to do death,” she said.

“Death is so important because if you don’t offer good support, if you don’t offer genuine response to what that family needs, there’s going to be complicated bereavement results because people don’t move through and grow with their grief. They can get stuck.”

She said often people found it easier to talk openly about death with a doula, but she always encouraged people to have those same conversations at home so their next of kin understood their wishes.

“Talking about death is not weird. It’s important.

“Ask anyone who has had to work through a complicated death process such as a tragic death or complicated families or someone has died and left everything undone and the family has to pick up the pieces.

“Have these conversations when you’re young and well and alive and engaged, and have these conversations ongoing because things change. Relationships change. Expectations change. So don’t be afraid and keep having that conversation.”

Events are being held across Australia on August 8 for Dying to Know Day, which aims to start conversations around death, dying and bereavement.

For more information and to find events near you visit the Dying to Know Day website.

Complete Article HERE!

What does it mean to have a ‘good death’?

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What do you see when you picture an ideal death?

Are you surrounded by friends and family members, or is the setting more intimate? Are you at a hospital or at home? Are you pain-free? Were you able to feed yourself up until your death? Is there a spiritual element to your experience?

“We talk about personal medicine, but there should be personalized death too,” said Dr. Dilip Jeste, director of the Sam and Rose Stein Institute for Research on Aging at UC San Diego School of Medicine. “Finding out what kind of death a person would like to have should not be a taboo topic.”

To help open up the conversation in our death-phobic culture, Jeste and his colleagues are working on a broad definition of a “good death” that will help healthcare workers and family members ensure that a dying person’s final moments are as comfortable and meaningful as possible.

“You can make it a positive experience for everybody,” Jeste said. “Yes, it is a sad experience, but knowing it is inevitable, let us see what we can do that will help.”

The group’s first step was to look at previously published studies that examined what constitutes a good death according to people who are dying, their family members and healthcare workers.

The results were published this week in the American Journal of Geriatric Psychiatry.

The researchers searched through two large research databases — PubMed and PsycINFO — but they were able to find only 36 articles in the last 20 years that were relevant to their work.

Jeste said the lack of studies on a good death was not surprising.

“We don’t want to deal with unpleasant things, and there is nothing good that we associate with death, so why do research on it?” he said.

The articles the team did find included studies done in the United States, Japan, the Netherlands, Iran, Israel and Turkey.

From these, they identified 11 different themes that contribute to successful dying including dignity, pain-free status, quality of life, family, emotional well being, and religiosity and spirituality. Also on the list were life completion, treatment preferences, preference for dying process, relationship with healthcare provider, and “other.”

The authors report that the most important elements of a good death differ depending on whom you ask, but there was agreement on some of them.

One hundred percent of patients and family members as well as 94% of healthcare workers said preference for the dying process — defined as getting to choose who is with you when you die, as well as where and when — is an important element of a successful death.

There was also widespread agreement that being pain-free at the time of death is an important component of successful dying. Ninety percent of family members, 85% of patients and 83% of healthcare workers mentioned it across the various studies.

Religiosity and spirituality — meeting with clergy, having faith, and receiving religious or spiritual comfort — appeared to be significantly more important to the definition of a good death by those who were dying than to family members or healthcare workers. The authors report that this theme was brought up by 65% of patients, but just 59% of healthcare workers and 50% of family members.

Family members were more concerned with the idea of dignity –defined here as being respected as an individual and having independence — at the end of life than either healthcare workers or patients were. The idea that dignity was an important element of a good death was brought up by 80% of family members, but just 61% of healthcare workers and 55% of patients.

Similarly, having a good quality of life –meaning living as usual, and believing life is worth living even at the end– was listed as an important part of a good death by 70% of family members, but just 35% of patients and 22% of healthcare workers.

“For a dying person, the concerns seem to be more existential and psychological and less physical,” Jeste said.

And here the authors see a call to action.

“Although it is important that we attend to the patient’s physical symptoms… it is crucial that the healthcare system… more closely address psychological, social and spirituality themes in the end-of-life care for both patients and families,” they write.

They also say this work is just the start of a much longer conversation.

Jeste hopes that one day terminally ill patients might receive a checklist that will help them think about and express what they consider a good death so that family members and healthcare workers can help them achieve it.

“We are not just interested in research,” Jeste said. “We are interested in improving well being.”

Complete Article HERE!