The language of living and dying

When it comes to caring for people with cancer, how clinicians talk about palliative care can make a huge difference to patients and their families

For many, palliative care means spending more time at home, rather than in hospital.

By Jennifer Philip

As a society, we are not very sophisticated when we talk about serious illness and death. We talk of fighting, of battling against, of staying positive and of not giving up.

Of course, this has implications for those whose illness continues or worsens. Are they losing the fight? And what does it mean about their attitude? Have they given in?

In our research, recently published in Palliative Medicine, we found the power of language is particularly poignant when it comes to how clinicians talk about end of life care. It can lead to misunderstandings, but also sadly, even tragically, to suffering and missed opportunities.

We’re looking into this at the Victorian Comprehensive Cancer Centre’s Palliative Medicine Research Group. Based at St Vincent’s Hospital Melbourne, our group brings together clinicians, researchers and allied health professionals, seeking to effect positive and systemic change in palliative care practice.

Our language around illness is reflected in the media, as we read with excitement of “a breakthrough in the fight against cancer/dementia/heart disease” – insert your illness of interest.

However, palliative care in the media and in the lives of real people, of patients, is often discussed as “there was nothing more that could be done, so they went into palliative care”.

The language that we use has direct and very serious consequences. To say that “there was no more treatment, so they had palliative care” implies that palliative care is not treatment. This language serves to limit possibilities since it negates the opportunity to choose palliative care, and the benefits that it may provide.

Why does this language matter?

Well firstly, it propagates a misperception about palliative care. Contrary to “no more to be done” and “non-treatment”, palliative care is highly effective and beneficial.

It has been proven in clinical trials to ensure better pain and symptom relief and, for many, means better quality of life than when patients are solely cared for by usual health providers such as oncology, respiratory and cardiology services.

Palliative care has also been shown to improve patients’ satisfaction with care, as they have more information and understanding of their circumstances and the choices available to them. It means they are empowered to make decisions that match their values – which, for many, means less time in hospital, and being more likely to die at home.

It can be common for doctors to avoid talking about palliative care until death is very close.

Research has shown that palliative care means that when people do die, their families experience less distress and have better health outcomes themselves.

And it means, based on a number of studies, that people live longer. Yes, palliative care improves survival – as much as a number of newer chemotherapy treatments. And all of these benefits increase if palliative care is introduced early.

None of this sounds like “no more can be done” or a “non-treatment option”. Yet because of the language used and the associated stigma, patients (and doctors) are fearful of mentioning palliative care, much less to introduce it early.

Instead, patients think that palliative care equals death, and worse still, death in an institution “where people do things to you”, as one of our research participants said; where there are no choices.

This is the very antithesis of what palliative care seeks, and is proven to do.

And so, as if even the words ‘palliative care’ will themselves, bring about death, we avoid it until death is very close. Palliative care, raised in these circumstances, becomes linked with imminent death, and the cycle of misperception and missed opportunities (and poor care) continues.

These missed opportunities may include a lifetime of valuable things to be said to someone we love, a trip to a special place, or a chance to think through whether a further round of treatment will enable achievement of an important goal.

And poor care may include pain that is not well managed for six of the last eight months, or a young child that wonders if Dad’s illness was caused by something they did.

So what needs to be done?

Clinical trials into palliative care find ensure better pain and symptom relief, and better quality of life.

We need to listen to the evidence. We need to think about the language that we use to speak about illness and death, to think about its impact for readers of today, and for patients of tomorrow.

We need to be sensitive and direct. And we need to learn to sit with the discomfort that not all is black or white, fighting or giving up, treatment or no treatment. That things that are hard to consider and face will inevitably mean hard conversations are to be had.

These conversations, though difficult, can be immensely rewarding and also may be the most important conversations for a person’s life. We all have a responsibility and a role to ensure our language facilitates understanding and choice, not its opposite.

Complete Article HERE!

The Comfort of Hospice Massage at Life’s End

Hospice massage was once distrusted, but now helps thousands die comfortably

Licensed massage therapist Cindy Spence providing a massage for a 41-year-old breast cancer patient, five weeks prior to death.

By Bill Ward

In 1998, Cindy Spence watched in horror as her hospitalized, cancer-stricken father-in-law was denied the massage he desperately requested. Then and there, the Texas woman’s career path became clear.

“He entered a pain-filled and despondent state in which the only thought that gave him any pleasure at all was to have a hospice therapist come to his hospital room,” Spence recalls. But in 1998, massage therapy was contraindicated for cancer patients. The thinking was that massage would spread cancer cells or might break a tumor.

“That just felt wrong to me,” Spence says.

Now Spence is one of hundreds of hospice massage therapists nationwide, working at the T. Boone Pickens Center at Faith Presbyterian Hospice in Dallas. MK Brennan, president of the Society for Oncology Massage, estimates that at least 250 U.S. hospitals provide hospice massage, and the number is growing.

According to the American Massage Therapy Association (AMTA), massage therapy was a $16 billion industry in the country in 2017 — more than twice the revenues of a decade earlier.

“Ever since the 1940s and ’50s, we’ve been working to establish ourselves as health care providers rather than adult entertainers,” Brennan says.

This perception had changed little when massage therapist Irene Smith basically launched the hospice massage field in 1982. Nor had the other part of the equation — hospice care — caught on.

“You had two topics within the field that have been very scary to the general public,” Smith says. “Massage was not a mainstream modality of care for many, many years, and death has never been a dinner-table conversation until the past decade.”

It didn’t help that, at least literally, we were not a “touchy-feely” society.

“Touch has been very misunderstood,” Smith says. “Touch is in the forefront of neuroscience, with more information coming to the mainstream public in relation to the positive outcomes of being touched. More and more people are becoming aware of its benefits from birth to death.”

That’s why Smith founded the influential California-based Everflowing program, whose mission is “to teach mindful touching and the practice of therapeutic presence as opportunities to recognize and express tenderness in caregiving.”

The Public Presses the Issue of Hospice Massage

Integration of massage at medical facilities often requires public demand. As hospice massage therapists toiled as freelancers and volunteers, patients and their families saw the benefits of the practice and increasingly have come to insist on it.

“We have seen a definite acceptance and growth for requesting massage,” says Meg Robsahm, an independent hospice massage therapist in Rochester, Minn. “We have also seen an increase in hospice companies adding it to their service menus simply because of demand.”

Massage therapist Theresa J. Herman of Allina Health’s hospice program out of Minneapolis has observed a similar progression.

“I started as a volunteer. The patients were beginning to ask for this, so all the big [facilities] realized they couldn’t provide coverage with just volunteers,” Herman says. “Insurance wouldn’t cover it, so we had to come up with donations, philanthropy or pulling it out of little corners of the budget.”

Still, Brennan says, staff positions for hospice massage therapists remain relatively limited, and there are few signs that insurers will start including it in their standard coverage. On the contrary, independent massage therapists are strongly advised to buy liability coverage to work in hospice care.

Touching in Many Ways

At least for now, advocates for hospice massage have research on their side.

According to the AMTA, a 2014 study focused on integrating massage therapy into palliative care found “statistically significant changes in pain, anxiety, relaxation and inner peace of patients, decreasing both pain intensity and anxiety while increasing the patients’ sense of relaxation and inner peace.” (Palliative, or comfort, care is appropriate for people of any age at any stage of a serious illness. Hospice care is generally for those who have six or fewer months to live and who are no longer receiving active treatment.)

The study’s results are why these therapists recognize that their role is, as Smith puts it, “to comfort — not cure — to validate, to honor, to soothe and to respect.”

Other therapists often point to the wide-ranging, even holistic nature of their work.

“The dying process involves physical, spiritual, mental and emotional pain,” Spence says. “RNs can work with the physical pain, chaplains with the spiritual pain and social workers with the mental and emotional pain. I feel that massage and music therapy are the only ones that treat all of those modalities.”

Getting the Family Involved

Smith and her peers strive to have family members present during hospice massage sessions, not just to observe but to participate — to learn how to be gentle with touch.

“Families sometimes have no way to connect with their loved ones, and massage can offer that connection,” Robsahm says. “It can bring a sense of peacefulness in the end stages.”

Families are generally relieved that their loved ones are finding relief and relaxation.

“Especially as someone is close to death — say 48 hours — if I’m in the midst of that family and they’re interested, I will have them sit next to me and have them do what I do,” Robsahm says. “At a certain point, my time will be up, and they will get to be the person to hold their hand, stroke their neck, put oil or lotion on their feet.”

The patient and the family are not alone in reaping something profound out of the experience, according to Spence.

“I have made a commitment to find every ounce of joy,” Spence says. “I knew when I came in that there would be a lot of sorrow, but I didn’t know I would laugh with patients and their families as much as I have.”

Or, as Robsahm puts it: “It moves beyond physical contact. We touch people’s bodies, and in the end, we touch them in their soul.”

Complete Article HERE!

‘Why I won’t be putting off death cleaning’

Is it better to declutter and move to something smaller long before the inevitable happens?

By Rebecca Huntley

Four years ago, a dear friend of the family, ‘Jane’, died of bowel cancer.

Jane had helped me around the house and looked after my first daughter, from the time she was a baby up until she went to school. We kept in touch over the years, and soon after my twins were born, she got the diagnosis.

The last time I saw her she was frail and could barely walk.

Sitting on the couch together in her daughter’s apartment, she took my hand and said, “Everything I have left I am wearing. I’ve got rid of the lot. I don’t want the kids to have to mess around with all my things when I’m gone”.

I was so impressed, not just by Jane’s organisation and foresight (which I knew all about), but by her generosity.

Leaving very few possessions behind was one of the greatest parting gifts she could give to her children.

Since then I’ve been thinking a lot about the things we leave behind when we die.

By ‘things’, I don’t mean the intangibles like the life lessons, memories and enduring love that sustain family and friends. Or the legacy of work done in our professional lives or the unpaid work in the community.

But the actual things. Candlesticks. Sporting trophies. Mugs.

You know, the kind of items that we occasionally wonder might be worth some mind-boggling sum if we ever managed to take them to an Antiques Roadshow. The millions, maybe billions of items, continuously gathering dust in the houses and apartments across the nation.

Of course, it has something to do with my stage of life.

As I head towards 50, I see many of my friends going through the emotionally draining and physically exhausting process of helping a sick or widowed parent pack up and sell a family home.

Friends tell me about the days and nights spent working through boxes and boxes of candlesticks, sporting trophies and mugs with an ailing or grieving parent.

And spending days working out what goes in the bin, gets donated to charity, given away or taken to the next dwelling, which is by necessity a half or a quarter of the size of the home they’re leaving.

“No candlesticks, just memories.”

It’s also a story echoed in the research I do with Australians.

And, on the whole, a story mostly told by daughters and granddaughters. In fact, I’ve found it’s largely these women responsible for this forced decluttering and managing of parents’ affairs at this time of life.

It takes its toll on these women, not just physically and emotionally, but even financially as they have to pull back from work to play this caring role.

It often comes at a time when the daughters are at the tail end of caring for their own children. A time when they thought they might have a chance to increase their paid work, or spend time and energy on personal goals.

Then suddenly, these women have responsibilities to parents almost as demanding as those associated with small children — with all the uncertainty and disruption, and far less of the joy that comes with looking after little ones.

In my role as a social researcher, I’ve met mothers trying to support a child through a final year of school — at the same time as helping a widowed parent find retirement living and pack up and sell their family home.

Death-induced decluttering. At the very moment you should be taking time and energy to grieve, you are knee-deep in cardboard boxes and vintage knick-knacks.

Decluttering is a global trend in affluent countries like Australia, led by a slew of ‘less is more’ advocates like author Marie Kondo and Oprah’s organising guru, Peter Walsh.

There’s Swedish death cleaning, döstädning, which is the practice of mindfully clearing out one’s own possessions during later years.

Not to mention the influential effects of the ABC’s War on Waste and how it’s challenging all of us to be more aware of what we buy and what we toss.

Death cleaning helps those family and friends we leave behind, but it’s emotionally draining and physically exhausting.

They’re all terrific developments. Although I worry that these messages sometimes get framed in terms of ‘good taste’ and ‘shame’.

Is it easier for some of us to declutter than it is for others? Is there a ‘clutter divide’ where the more affluent you are, the easier it is to live with less?

A single wealthy man who can afford a sparsely and elegantly decorated apartment in the centre of the city can certainly make do with fewer things, compared to a larger family living in the suburbs without social and cultural amenities within walking distance.

That said, visiting thousands of houses all over Australia for my work has made me realise many of us are living in homes full of things we find hard to get rid of — that is, until something forces us to.

Downsizing in a crisis (death, financial difficulty, illness) is doubly distressing.

I wonder whether it makes better sense to chuck the stuff and move to something smaller long before the inevitable happens.

If I am lucky enough to die of old age, I know what I want to leave behind. Saying goodbye to Jane on that couch confirmed it for me.

I will shuffle off this mortal coil with nothing left but a silk nightie, some precious paintings on the walls around me, and a handful of photos in my bony hands.

No candlesticks, just memories.

Complete Article HERE!

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!

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!

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!