Cancer, Religion and a ‘Good’ Death

It is hard to know how much my patient, caught in an eternal childhood, understood about his cancer.

By A. Sekeres, M.D.

When I first met my patient, three years ago, he was about my age chronologically, but caught in an eternal childhood intellectually.

It may have been something he was born with, or an injury at birth that deprived his brain of oxygen for too long — I could never find out. But the man staring at me from the hospital bed would have been an apt playmate for my young son back home.

“How are you doing today, sir?” he asked as soon as I walked into his room. He was in his hospital gown, had thick glasses, and wore a necklace with a silver pendant around his neck. So polite. His mother, who sat by his bedside in a chair and had cared for him for almost half a century, had raised him alone, and raised him right.

We had just confirmed he had cancer and needed to start treatment urgently. I tried to assess what he understood about his diagnosis.

“Do you know why you’re here?” I asked him.

He smiled broadly, looking around the room. “Because I’m sick,” he answered. Of course. People go to hospitals when they’re ill.

I smiled back at him. “That’s absolutely right. Do you have any idea what sickness you have?”

Uncertainty descended over his face and he glanced quickly over to his mother.

“We were told he has leukemia,” she said. She held a pen that was poised over a lined notebook on which she had already written the word leukemia at the top of the page; I would see that notebook fill with questions and answers over the subsequent times they would visit the clinic. “What exactly is that?” she asked.

I described how leukemia arose and commandeered the factory of the bone marrow that makes the blood’s components for its own sinister purposes, devastating the blood counts, and how we would try to rein it in with chemotherapy.

“The chemotherapy kills the bad cells, but also unfortunately the good cells in the bone marrow, too, so we’ll need to support you through the treatment with red blood cell and platelet transfusions,” I told them both. I wasn’t sure how much of our conversation my patient grasped, but he recognized that his mother and I were having a serious conversation about his health and stayed respectfully quiet, even when I asked him if he had questions.

His mother shook her head. “That won’t work. We’re Jehovah’s Witnesses and can’t accept blood.”

As I’ve written about previously, members of this religious group believe it is wrong to receive the blood of another human being, and that doing so violates God’s law, even if it is potentially lifesaving. We compromised on a lower-dose treatment that was less likely to necessitate supportive transfusions, but also less likely than standard chemotherapy to be effective.

“Is that OK with you?” my patient’s mother asked him. I liked how she included him in the decision-making, regardless of what he could comprehend.

“Sounds good to me!” He gave us both a wide smile.

We started the weeklong lower-dose treatment. And as luck would have it, or science, or perhaps it was divine intervention, the therapy worked, his blood counts normalized, and the leukemia evaporated.

I saw him monthly in my outpatient clinic as we continued his therapy, one week out of every month. He delighted in recounting a bus trip he took with his church, or his latest art trouvé from a flea market — necklaces with glass or metal pendants; copper bracelets; the occasional bolo tie.

“I bought three of these for five dollars,” my patient confided to me, proud of the shrewdness of his wheeling and dealing.

And each time I walked into the exam room to see him, he started our conversation by politely asking, “How’s your family doing? They doing OK?”

Over two years passed before the leukemia returned. We tried the only other therapy that might work without leveling his blood counts, this one targeting a genetic abnormality in his leukemia cells. But the leukemia raged back, shrugging off the fancy new drug as his platelets, which we couldn’t replace, continued to drop precipitously:

Half normal.

One-quarter normal.

One-10th normal.

One-20th normal.

He was going to die. I met with my patient and his mother and, to prepare, asked them about what kind of aggressive measures they might want at the end of life. With the backdrop of Covid-19 forcing us all to wear masks, it was hard to interpret their reactions to my questions. It also added to our general sense of helplessness to stop a merciless disease.

Would he want to be placed on a breathing machine?

“What do you think?” his mother asked him. He looked hesitantly at me and at her.

“That would be OK,” he answered.

What about chest compressions for a cardiac arrest?

Again his mother deferred to him. He shrugged his shoulders, unsure.

I turned to my patient’s mother, trying to engage her to help with these decisions. “I worry that he may not realize what stage the cancer has reached, and want to avoid his being treated aggressively as he gets sicker,” I began. “Maybe we could even keep him out of the hospital entirely and allow him to stay home, when there’s little chance …” My voice trailed off.

Her eyes above her mask locked with mine and turned serious. “We’re aware. But we’re not going to deprive him of hope at the end …” This time her voice trailed off, and she swallowed hard.

I nodded and turned back to my patient. “How do you think things are going with your leukemia?”

His mask crinkled as he smiled underneath it. “I think they’re going good!”

A few days later, my patient developed a headache, along with nausea and dizziness. His mother called 911 and he was rushed to the hospital, where he was found to have an intracranial hemorrhage, a result of the low platelets. He slipped into a coma and was placed on a ventilator, and died soon afterward, alone because of the limitations on visitors to the hospital during the pandemic.

At the end, he didn’t suffer much. And as a parent, I can’t say for certain that I would have the strength to care for a dying child at home.

Complete Article HERE!

She watched her mother die.

It inspired her most hopeful novel yet

By Stuart Miller

In the quietly simmering drama of Karolina Waclawiak’s new novel “Life Events,” Evelyn has lost her job, her marriage is flatlining, and she frequently frets about death, especially the eventual passing of her parents. Only when this Silver Lake drifter trains to become a death doula — to have the uncomfortable conversations that help the terminally ill come to terms with the life they lived — does she begin to shift from dreading the future to living in the present.

Evelyn is in a near constant state of “pre-grieving,” or what others call “anticipatory grief,” Waclawiak said during a phone interview last spring. “But we have no control over grief. That’s not how it works at all.”

The author of two previous novels began writing “Life Events” six years ago. “It’s unfortunately very timely,” says Waclawiak. “We’re all in this collective grief now. Our loved ones are dying alone, and I can’t think of anything worse. We’re all going to be collectively traumatized, and that’s something we’re going to have to deal with.”

Waclawiak’s initial inspiration was an episode of the podcast Criminal about an “exit guide,” a companion for terminally ill people ending their lives. Fascinated by new approaches to end-of-life issues, she watched videos of people working in the death-with-dignity movement; soon, she took a death doula course herself.

While her research explored the broader societal changes behind the movement, the novel’s themes are intimately personal and somewhat autobiographical. Waclawiak helped care for her grandfather when he was dying 13 years ago. Her mother, who was sick off and on since Waclawiak was 12, was diagnosed with cancer in 2015, soon after Waclawiak started writing “Life Events.” She died last September.

“Obviously this was a big part of why I wrote this,” she says, adding that she writes to understand her pain. “I start with a larger question that I’m trying to face, not necessarily answer.”

In her first novel, “How To Get Into the Twin Palms,” also set in L.A. and featuring a Polish immigrant who passes herself off as Russian, the big question was, “Who are you if you take away your ethnic identity?” Her follow-up, “The Invaders,” grappled with the “limitations and stresses” of living among people of a higher socioeconomic class than you are.

Those questions too arose from Waclawiak’s life. Her parents fled Communist Poland when she was two, eventually setting in suburban Connecticut. “I’m extremely Americanized, but I always felt like an outsider,” says Waclawiak, who studied screenwriting at USC and then worked as an assistant on “The Simpsons.” After getting an MFA at Columbia University, she began writing screenplays in New York — the well-received “AWOL” and a second film that was in preproduction when the pandemic hit. Now she’s back in the city where “Life Events” is set. (“Set” is an understatement: Each of her books is suffused with a deep sense of place, owing to Waclawiak’s road trips through the regions she’s writing about.)

Waclawiak believes her background has better prepared her for facing death than most Americans. On return trips to Poland, her family would join others who spend Saturdays at the cemetery, visiting dead relatives and cleaning their gravestones. “There’s a sense of ritual there,” says Waclawiak, “while Americans approach death with a sense of fear and denial.”

Despite its morbid subject matter, “Life Events” is more optimistic than her previous work, in which the protagonists sometimes seemed hellbent on self-sabotage or even self-destruction. In contrast, Evelyn’s work with her dying clients helps her reassess everything, from her marriage to her long-term future, with newfound clarity.

“I felt a book about death was going to be tough to read, and I was thinking about the reader’s experience,’” Waclawiak says. “I really wanted Evelyn to use her proximity to death to be a catalyst to push herself out of this stagnation and to feel a sense of hope, because you have to. This life is so hard.”

Struggling to give Evelyn more control over her messy life, Waclawiak wrote an entire first draft in the third person, then threw almost all of it away. “Evelyn had to have a sense of agency,” she says. “That awareness that you have choices is a really huge shift in the storytelling.”

Call it a midlife awakening: Since writing her last novel, Waclawiak turned 40 and watched her mother get sicker. “You can’t help but take a microscope to the way you are living,” she says. Her mother, approaching her life’s end, pushed Waclawiak to think about her own future — about “seeing what I can do differently now and how I can change my perspective.”

What colleagues notice most about Waclawiak’s work is that fine balance between fatalism and optimism. She is not a “cheerful writer, but she’s not reflexively cynical,” says Ben Smith, the New York Times media columnist and former editor in chief of Buzzfeed, where Waclawiak works as an editor. “She captures the desperation Americans feel in leading superficially ordinary lives.”

Emily Bell, who edited “Life Events” at Farrar, Straus and Giroux, praises the author’s “ability to balance an understated tone with high emotional stakes” as she explores “what it means if you don’t fulfill the expectations of society.”

As for Waclawiak’s expectations, she has always held a day job while writing. “I never had illusions that my creative work would pay the bills,” she says, “and that gives me the freedom to write weird stuff.”

She knows some readers “have an issue with complicated women who don’t always make the best choices for themselves,” but she refuses to tidy up her fiction. “There’s an expectation of how women should behave; they shouldn’t be messy or be complicated in a way that seems vulnerable or gross. But there are countless male narrators in fiction and all over television who are highly self-destructive.”

Waclawiak became so frustrated by aspersions on her “unlikable female narrators” that she designed a course at Columbia around such characters. “Let me put a woman up against the wall and see how she squirms out of whatever situation I put her in, not in a way that feels exploitative,” she says. “It’s about realizing there’s something to learn in the suffering and the pain.”

In “Life Events,” it’s about Evelyn learning not just that she has choices but that she has the chance to create new ones — a wisdom that emerges, ironically, from coping with the one thing no one can opt out of. “When the people you love are dying, it changes you, and you really start to question what you thought was important,” Waclawiak says. “I wanted the reader to think about how consciously they were living their own lives.”

Complete Article HERE!

A will doesn’t cover all your bases when it comes to end-of-life decisions.

Here’s what else you need

By Sarah O’Brien

  • A will is just one of several legal documents that help your loved ones know your end-of-life wishes.
  • If a person passes away without a will, a court may decide who gets their assets and who would care for any surviving children.
  • However, some assets pass outside of the will, including retirement accounts and life insurance.

As the coronavirus continues sweeping through U.S. communities and the death toll keeps rising, you might be considering your own mortality.

Regardless of the pandemic, experts say it’s important to plan for when you’re not here — that is, give thought to what would happen to your bank accounts, your home and your belongings, as well as, perhaps, your dependents.

That planning should start with a will. And apparently people know they need to take action, based on Google trends showing a jump in searches for information about creating one. 

“In every jurisdiction, if there isn’t a valid will, assets will pass on to your heirs by law, who may or may not be who you would have provided for in a will,” said Samantha Weyrauch Davis, an estate planning attorney and director with the law firm Hall Estill in Tulsa, Oklahoma. “It also lets you name a guardian for children.”

If you pass away with no will — called dying intestate — a state court decides who gets your assets and, if you have children, who will care for them.

This means that if you have an unmarried partner or a favorite charity but no will, your assets may not end up with them. Typically, the courts will pass on assets to your closest blood relatives, even if that wouldn’t have been your first choice.

However, a will is just one piece of an “estate plan.” An estate just refers to what you own — your financial accounts, possessions and any real estate. Putting a plan in place for those assets helps ensure that upon your death, your wishes are carried out and that family squabbles don’t evolve into destroyed relationships.

In other words, it’s partly about making things easier for your loved ones during an already-difficult time.

Here’s what else you should consider if you want to prepare.

What a will can and can’t do

A will is a document that lets you relay who gets what when you pass away. You can get as specific as you want (you leave a certain family heirloom to a particular person) or keep it more general (you want your surviving spouse to get everything).

However, there are some assets that pass outside of the will, including retirement accounts such as 401(k) plans and individual retirement accounts, as well as life insurance policies.

This means the person named as a beneficiary on those accounts will generally receive the money no matter what your will says. (Be aware that 401[k] plans require your current spouse to be the beneficiary unless they legally agree otherwise).

Those [online] forms or software may not be compliant with your local law, so look at the fine print.

Samantha Weyrauch Davis
Director with Hall Estill

Regular bank accounts, too, can have beneficiaries listed on a payable-on-death form, also known as a POD, which your bank can supply.

If no beneficiary is listed on those non-will items or the beneficiary has already passed away, the assets automatically go into probate. That’s the process by which all of your debt is paid off and then the remaining assets are distributed to heirs. The process can last several months to a year or more, depending on state laws and what’s involved in handling your estate.

If you own a home, be sure to find out how it should be titled to ensure it ends up with the person (or people) you want it to, because the laws can vary from state to state. Moreover, there can be other considerations when it comes to how a house is titled, including protection from potential creditors or for tax reasons later when the home is sold.

Another big decision

As part of the will-making process, you’ll need to pick an executor of your will (sometimes called a personal representative).

This can be a big job, experts say. Things such as liquidating accounts, ensuring your assets go to the proper beneficiaries, paying any debts not discharged (i.e., taxes owed to the IRS), and even selling your home could be among the duties undertaken by the executor.

In other words, just because you’ve known your best friend since elementary school doesn’t mean handling the challenge of being an executor is up their alley.

Where to get a will

To prepare a will, you can turn to an estate planning attorney in your local area — to ensure familiarity with state laws — or use an online option. However, be aware that not all of the web-based alternatives will necessarily reflect the specifics of your state’s law.

“There’s risk in doing it that way,” Davis said. “Those forms or software may not be compliant with your local law, so look at the fine print.”

If an online option ends up being appropriate for your situation, you may be able to find a form to download for free. Software will-making options can run about $60 or more, depending on what else is included. To set up an estate plan with an attorney could run several hundred dollars to more than $1,000, depending on the complexity of your situation.

Also, you’ll need to have a witness and/or notary sign it and make the document official, depending on the state where you live. The American College of Trust and Estate Counsel’s website offers a guide to laws and accommodations in every state if in-person meetings are not permitted due to the pandemic.

Other documents

Typically, estate planning also includes preparing a few other legal documents. This includes an advance health-care directive, also known as a living will.

This document outlines your wishes if you become incapacitated due to illness or injury.

Say you are on life support. Instead of a loved one making the agonizing decision whether to end all life-saving measures, your wishes would be specified in a legal record.

It’s also worth assigning powers of attorney. If you become incapacitated, the people to whom you grant powers of attorney will handle your medical and financial affairs if you cannot.

Often, the person who is given this responsibility when it comes to your health care is different from whom you would name to handle your financial affairs.

As with choosing an executor, make sure whoever you hand the financial reins to is trustworthy and smart.

“I tell my clients it’s really important to carefully consider the individuals you name,” Davis said. “You want to make sure they have the ability, skill set, time and desire to make such decisions and do these sorts of things.”

Make a list of critical documents

While it can be hard to imagine your own death, picture your family having to search through drawers for your original will, documents regarding your bank accounts and other assets, and maybe even your Social Security number.

The best way to avoid forcing them to deal with that task on top of mourning is to leave an organized list of information that the will’s executor will need to settle your estate, experts say. Be sure this includes passwords so your online accounts can be accessed.

Consider a trust

If you want your kids to receive money but don’t want to give a young adult — or one prone to poor money management — unfettered access to a sudden windfall, you can consider creating a trust to be the beneficiary of a particular asset.

A trust holds assets on behalf of your beneficiary or beneficiaries, and is a legal entity dictated by the documents creating it. If you go that route, the assets go into the trust instead of directly to your heirs. They can only receive money according to how (or when) you’ve stipulated in the trust documents.

The average cost to set up a trust using an attorney ranges from $1,000 to $1,500 for an individual and $1,200 to $1,500 for a couple, according to Doing it yourself with online software could run several hundreds of dollars or more.

Complete Article HERE!

When my 18-year-old son died, no one let me talk about him

By Leia Rosenberg

When doctors tell you that your child has cancer, your world stops.

In January 2015, my then 17-year-old son, Connor, was diagnosed with T-lymphoblastic lymphoma, an aggressive form of non-Hodgkins. At first I went into a state of complete shock and disbelief. All I could do was cry. However, once the medical professionals told us that there was a high chance of the illness being cured, hope set in.

Being a ‘fixer’ by nature I clicked into the best coping mechanism I know – trying to sort out the problem, but of course illness doesn’t work that way. The prognosis was positive and treatment began, in the form of chemotherapy.

At the time, I didn’t notice anything else going on in the world. I have a vague recollection that people were very supportive, with acquaintances coming up to me in the local shop asking ‘How’s Connor doing? We are thinking of you all’ – but that’s it. All I was focused on was getting my boy better.

In September that same year, he was due for routine blood tests, but had come home from the hospital for a few days and was staying at his dad’s. When I went to collect Connor, I arrived to find him nearly unconscious on his bed. He was bleeding out of everywhere, so we drove straight to the hospital.

I was so frightened, my anxiety was in overdrive. I knew something was very wrong, and called his dad, who joined us in the hospital.

That was the day we were told that Connor’s cancer was terminal.

The medical staff took us to one side and said that we didn’t have that long left with him. I was in shock, I couldn’t believe it – it wouldn’t sink in. A small amount of radiation therapy was given nearer the end of his life, but the tumours had grown near vital organs and radiation couldn’t be accurately targeted without causing further damage.

As mums, we are innately driven to protect our children but I couldn’t keep Connor safe or make him better. I felt like I had failed my son.

Less than a year after his diagnosis, in October 2015, when he was just 18 years old, Connor died from his cancer. Days before it happened, he told me that he was only holding on for everyone else – so I told him that it was OK to let go.

His body slowly gave up, and bit by bit his organs started to shut down before he finally took his last breath in front of us. There are no words to fully encapsulate how this feels; how watching the life you gave to someone leave before their time.

I didn’t go out for a long time, I couldn’t walk in a world where everyone else was still carrying on as normal (Picture: Leia Rosenberg)

Partially, I felt relief – Connor had been suffering – but the rest of me was exhausted, broken and numb. Death is difficult for anyone, but when your child dies, the pain is insurmountable.

For the first few weeks, all I could do was sleep. I didn’t go out for a long time, I couldn’t walk in a world where everyone else was still carrying on as normal. And when I did, the well-wishers in the community steered clear of me or stared with pity and concern. 

Old work colleagues who would have usually said hello, crossed the road and avoided eye contact. Others would brave a fleeting ‘I’m so sorry’ and walk off. I tried to go back to work quite soon after Connor had died. I needed a distraction – but I was told to go home, because they didn’t want to deal with me.

A few weeks after his death, family members began to accuse me of being selfish because ‘everyone has problems’ and told me to ‘stop moping around’. Friends, who couldn’t stomach being in my company for more than 10 minutes at a time stopped contact all together. I felt like a leper.

Was I difficult to be around? Absolutely. I’d watched my only son die in front of me. I was sad and depressed, and so angry at the world. I also experienced significant PTSD symptoms of flashbacks, invasive memories, anxiety, vivid recurring dreams and sleeping difficulties – it took years for this to stop.

Perhaps that’s why people started treating me differently or avoided talking about Connor, but all I needed was for them to be there. Sometimes, just sitting in silence is enough. You can’t fix this, and neither can I.

Throughout the pandemic, my personal experience of loss has been at the fore.

When Connor was sick, I was able to be there; holding him, supporting him, taking him home or out for the day. He was allowed visitors and hundreds of people attended his funeral. Coronavirus has changed all of those factors and has left families even more devastated.

Parents can no longer hug their child who may be ill from Covid-19, they cannot comfort them nor receive the physical and emotional support from others in the same way we would have previously. 

The Government needs to invest in charities and agencies that complete the value support work, such as Sue Ryder (and other hospices), Winston Wish and specific therapeutic bereavement support.

Many of these organisations receive very little, if any, finances from the Government – yet they are needed the most, particularly now.

If you know someone who has lost a child, give them time, understanding and patience – grieving can take years to cope with at the best of times. Do not ever stop them talking about their dead children. They would never stop you talking about your living children.

A bereaved parent needs to know that their child’s life mattered, that they won’t be forgotten. I still celebrate Connor’s birthdays and imagine what he would have been like.

There were a handful of people who showed themselves, who did not shy away, who embraced me and my daughter, Connor’s sister, while struggling with their own loss. And, of course, the professionals who allowed me the space to grieve.

I also turned to other avenues, such as running. The gratitude I have for being able to put one foot in front of the other and to be in the great outdoors has been a massive help in moving me through my pain. I have also completed the first year of my master’s degree in applied positive psychology and have found it life-changing.

Above all, my daughter is my inspiration for life – she is an amazing young woman. Our relationship has always been strong but we have been brought closer together since Connor has died.

English language doesn’t have a word for bereaved parents or bereaved siblings, like they do for those who have lost a spouse, or both parents.

It’s almost as if our forefathers made an active choice for us to not talk about the death of a child. Their name, their life, their death becomes a bad word – one that should be left unspoken.

But I will never stop talking about my son. I will keep telling stories about Connor to keep him alive in my heart and mind, forever.

Complete Article HERE!

Reflections on getting ready to die


So far, I’m healthy, thank Pan, for a man my age, and except for a few non-life-threatening annoyances of long years’ use, my body seems to be holding up OK, and I’m grateful for what luck I’ve had. But I know that could change any minute. The stranger’s cough in some store, the contaminated fingerprint on the copier, the idiot with his nose outside his mask, who knows, you could get infected almost anywhere, via all sorts of sneaky vectors, and there really is no safe place.

So it’s a good time to think about contingencies, just in case. And the most inevitable and uncertain roll of the dice is death. If you catch COVID-19, it’s a long shot that it will kill you—unless of course you’re old, or fat, or already sick with something, or possibly young and otherwise healthy, nobody’s really sure why it takes some people—but this seems to me as good a time as any to get ready to die.

One thing I’ve always loved about gospel music is its existential urgency: You’re going to die and you’d better be ready to meet your Maker. If you believe in sin, you’ve sinned and it’s time to atone. You wish you could apologize to whomever you’ve hurt. And if you go down that road of remorse you’re in danger of being drawn into a black hole of a past you’ll never escape from. But maybe there’s a way to exorcise those bad deeds, some ritual—confession or spirit dance or primal scream—that can cleanse your soul of the shame.

Or you can forgive yourself for being human and screwing up repeatedly as nearly everyone does. You can accept your imperfections in whatever time is left, and maybe there’s time to correct them in your behavior and in relations with others. Maybe it’s not too late to change for the better.

There’s nothing like a deadline as a motivator, and the ultimate deadline is the greatest motivator of all because there is no grace period or overtime or extra innings. Death is a dead end. So you’d better get it together before it’s a done deal.

Thinking you could die any day brings your surroundings into sharper focus. More and more I appreciate the small pleasures—the sight of pelicans, smell of jasmine, sound of a song in the car, tactile feel of addressing an envelope and selecting the perfect stamp for the recipient, taste of the pasta sauce made from ingredients bought at the farmers market, friendly twinkle in the eye of the farmer as she hands you your change and you exchange masked thank-yous—and I seem to find them everywhere now that I’m about to be bereft of everything. When you’re about to lose it all, you realize what a gift it has all been.

So from imminent loss of everything comes a suddenly discovered abundance of what could never be kept anyway. As W.S. Merwin put it: “What you do not have you find everywhere.” Or Gary Young, my old friend who barely survived cancer in his 20s: “I’ve never felt more alive than when I was dying.” According to one biographer, the last words of Jorge Luis Borges were: “This is the happiest day of my life.” Or Page Smith in his final minutes: “It’s been a great life.”

These expressions of appreciation, of gratitude, of relief from all the suffering and distractions, remind me of how I’d like to live the rest of my days, no matter how much or how little time I have left. I don’t know whether time can be “wasted”—but I want to make the best possible use of it while I have the chance. That means not clicking on every link or trying to be liked or aspiring to other people’s expectations. Being ready to die means being ready to tell the truth. Any words you say could be your last.

Complete Article HERE!

Death anxiety

– body bags, catastrophic thinking and facing the inevitable

Psychologist and researcher at the University of Sydney Rachel Menzies, who studies death anxiety.


Rachel Menzies has lost count of the number of people she has zipped into body bags.

While other people stood around watching – sipping tea and nibbling on cake, or snapping photos of their friends’ faces disappearing into the plastic – she always stayed close by, waiting for rustling or a shout from inside the bag.

“They would stay in for however long they felt comfortable – some just for 10 seconds, others for a few minutes,” says Menzies, a Sydney-based psychologist and researcher at the University of Sydney.

After the occupants of the bag – psychologists, psychiatrists, and counsellors – clambered out, they were treated to a video of decomposing human bodies: bloating, maggots swarming over flesh that then ruptures and leaks fluids, and the open grin of a skull wrapped in shrunken skin. It was deliberately shocking, but Menzies says it serves as a reality check.

“It’s important to come to terms with the fact that, at the end of the day, we are all made of flesh and bone which will eventually decay. We need to stare death in the face instead of turning away and pretending it doesn’t happen.”

Psychologist Rachel Menzies says there is growing evidence that death anxiety is a transdiagnostic construct – something that causes or worsens a range of mental health disorders

The idea of death anxiety as central to mental health has been gaining attention in clinical psychology since roughly 2014, says Menzies. So in 2019, she and her clinical psychologist father, Professor Ross Menzies, toured the country running workshops to help mental health professionals address it with patients.

“We wanted to get participants trying out exercises they might recommend as exposure tasks [for clients], with the body bags being one of the more unusual tasks.”

“I would have loved to get a coffin and carry that around Australia, but it’s much less practical than a foldable plastic body bag.”

When fear of death becomes debilitating

Being afraid of dying and having occasional thoughts about it is normal, but if it gets in the way of life – working, travelling, or seeing friends – it’s becoming a problem, Menzies says. And in this particular Covid moment, it’s hard to escape reminders of our mortality, with doom and death tolls constantly in the news.

Canadian-based clinical psychologist Patricia Furer has been working with patients on death anxiety for about 20 years.

“I have found most people who are struggling with fear of death have had difficult experiences with illness and death that have made them particularly attuned to these concerns,” says Furer, an associate professor and director of the anxiety disorders clinic at Saint Boniface Hospital in Winnipeg.

‘People who have thought about what might happen after death … often sit in a more comfortable place when facing their own death,’ says Dr Kerrie Noonan.

“For example, having experienced deaths of four close family members or loved ones in one year or perhaps a series of difficult health issues in themselves and loved ones.”

Death anxiety isn’t recognised as a disorder in the US’s Diagnostic and Statistical Manual of Mental Disorders, but fear of death can be classified as a specific phobia (thanatophobia), and Menzies says there’s growing evidence that death anxiety is a transdiagnostic construct – something that causes or worsens a range of mental health disorders.

Furer agrees, but says a lot of research is needed to understand how it works across categories used for different diagnoses.

“I think it’s probably more of a concept or attribute – like we talk about perfectionism,” Menzies says.

A 2019 study led by Menzies found a strong relationship between death anxiety and worse severity of symptoms in 12 disorders including alcohol use disorder, depression, and social anxiety.

“Death anxiety was also significantly associated with a person’s number of hospitalisations, how many medications they’re on for their mental health, and how many different disorders they’ve had across their life,” Menzies says.

The risk of death anxiety worsening mental health conditions is particularly relevant now, Menzies says.

As an example of the sort of effect this might have, Menzies refers to a study where people with obsessive compulsive disorder were asked to complete personality questionnaires.

Those whose questionnaires included two questions about death spent more than twice as long washing their hands afterwards (more than 20 seconds compared to less than 10) than those who had two questions on dental pain.

Managing catastrophic thinking

If death anxiety is at the root of a mental health disorder, many current treatments may not be as effective as we think, Menzies says.

“If that underlying causal factor of death anxiety isn’t addressed, people might just return to health services with different conditions years later. Say they get effective treatment for OCD, but later develop health anxiety or a specific phobia.”

Menzies cites the case of Anna, 34, who came to Menzies having suffered health anxiety for 15 years and had seen several psychologists.

She often asked her GP for tests for fairly benign symptoms, such as headaches or minor skin irregularities, then worried they had missed something, asking for more tests and second opinions.

“Her worries focused on death-related outcomes, such as dying of cancer, and she made catastrophic interpretations of benign symptoms, for example assuming a headache was a brain tumour,” Menzies says.

“It became apparent that Anna also avoided things: flying, for fear of plane crashes, or driving long distances in case she had an accident. When asked about her general health, Anna mentioned she avoided any exercise as she worried the change in her heartrate may be a sign of a heart attack.”

Cognitive behaviour therapy (CBT) focused on exposure is the most evidence-based treatment for death anxiety, Menzies says.

But there’s a twist.

“Standard CBT for most disorders generally won’t touch on death at all, and if it does, it’s trying to disprove the person’s estimate of the likelihood of death: for a fear of flying, you’re trying to get them to see that dying in a plane crash is very unlikely,” Menzies says.

But as life comes with a 100% likelihood of death, says Menzies, reducing someone’s fear of dying from a specific cause won’t help. Instead of trying to convince someone that planes don’t crash, Menzies would suggest exposing that person to death-related situations, like writing their own obituary or planning their funeral.

In Anna’s case, therapy included books and TV shows featuring death, and gradually reducing her GP visits each month. Over time, she returned to work, and could see sick loved ones she had avoided visiting before, Menzies says.

Or you could also have your phone remind you five times a day that you’re going to die – which is what Menzies does. She has the app WeCroak and recommends it to clients to help normalise death.

“I often find I’m stewing on something or worrying about a deadline, then the notification comes up and helps put things in perspective.”

Furer also says writing a list of death-related fears can identify exactly what people are afraid of.

“For example, some people fear the process of dying, some people fear missing out on life after they are dead, some fear leaving loved ones behind.”

Finding joyful activities can balance out the more difficult exposure tasks, she adds.

“Fear of death can result in people limiting their lives and spending all of their time focused on their worries. Shifting at least some of their energy to building positive and satisfying activities into their day-to-day lives can be helpful.”

On the positive side, Furer says patients who were already working on death anxiety are feeling “particularly well-equipped” to manage current pandemic fears because they already had coping strategies – such as managing catastrophic thinking – in place.

Are we warming up to death?

Dr Kerrie Noonan, who researches community behaviours around dying, says death-related groups and public activities have bloomed in the last decade.

“There are weddings and community events in cemeteries, Coffin Club in Tasmania where you build your own casket, festivals like We’re All Going To Die,” says Noonan, a clinical psychologist and social researcher at Western Sydney University.

But it’s too soon to know whether this will lead to death anxiety easing in individuals, Noonan says.

“All this interest could speak to the fact we’re really anxious about dying, but we’re often educating ourselves in these events and that could help our fears decrease.

“In my experience [in palliative care] people who have thought about what might happen after death – whether they’re religious, spiritual, or have no religion – often sit in a more comfortable place when facing their own death.”

While first-hand experience around death can be agonising, it does appear to help us and others.

People experiencing loss often find a “mentor” in their family or friends who have experienced bereavement before, Noonan says.

“If we can deal with our fears about death and dying, we will be better at supporting our families, our friends, those who are dying and bereaved. We all need to be better at that – for ourselves, and for each other.”

Complete Article HERE!

How medical assistance in dying law has affected my family

-A caregiver’s perspective

A Quebec judge ruled last year that parts of the federal law on medically assisted dying were unconstitutional because of restrictions placed on eligibility, and on Feb. 24 this year the federal government tabled proposed amendments.

MAID isn’t about hypothetical cases in an academic debate, it’s about real people who are suffering

By Jason LeBlanc

Accessibility issues around medical assistance in dying in Canada are often spoken about within the parameters of “slippery slopes,” bioethical arguments with no clear answer given, and the discriminatory unfairness currently upheld by MAID legislation.

What often gets forgotten is that MAID isn’t about hypothetical cases in an academic debate, it’s about people. Real people who are suffering.

Chapter 7 of the Charter of Rights and Freedoms states, “Everyone has the right to life, liberty and security of the person and the right not to be deprived thereof except in accordance with the principles of fundamental justice.”

In other words, every Canadian has control over their own life.

In this spirit, you have the right to make decisions on your health, medical care, and bodily integrity. When a Canadian is compelled to take their life through violent, unpredictable, and dangerous means, because the government refuses to allow them the control and choice of a medically assisted death, it is a violation of those Charter guarantees.

The current federal MAID legislation was ruled unconstitutional last year because of restrictions it placed on eligibility, and on Feb. 24 this year the government tabled proposed amendments. While they expand eligibility to a small degree, the changes still fall short of the mark for many Canadians.

The federal government has unveiled its plans to expand access to medically assisted dying after public consultations. 2:01

My family is one that has been affected directly as a result of the government restricting MAID access to a select few. I am a caregiver to a wonderful woman, my common-law partner, who has been attempting to access a medically assisted death for more than two years now.

The restrictions put into the original Bill C-14 and not properly addressed in the proposed Bill C-7 have made it an absolute hell for her in terms of trying to have her Charter rights respected.

With the help of Dying with Dignity and Ontario’s care co-ordination service, she has received three independent assessments. She has fulfilled the entirety of the MAID criteria with the exception of not having a “reasonably foreseeable death,” however one chooses to define that term.

Of course, under Bill C-7’s proposed amendments, an applicant no longer has to be facing a reasonably foreseeable death to apply for MAID. But this doesn’t inherently mean that it will be a simple, straightforward process to qualify. As the Department of Justice puts it: “While ‘reasonable foreseeability of natural death’ is removed as an eligibility criterion in the proposed legislation, it is kept as a way of deciding which procedural safeguards will be applied to MAID requests.”

My partner’s diagnosis is treatment-resistant fibromyalgia, an often poorly understood form of chronic pain involving a cluster of symptoms that affect the whole body outwards from the central nervous system. Despite the fact that her pain is unrelenting, constant, intolerable, and irremediable, her diagnosis does not put her on track to a naturally shortened life span.

It is this factor that has excluded her from MAID for more than two years.

Minister of Justice and Attorney General David Lametti explains who can perform an expert assessment for medical assistance in dying. (The MAID town hall was recorded March 5, 2020.) 0:49

For years we’ve done everything possible to improve her quality of life and to control her pain. She’s tried over 30 medications, undergone extensive hospital testing, tried various forms of physiotherapy as well as non-traditional medicines and therapies, and been seen by five independent pain specialists.

The decision that was arrived at, to seek MAID, is not emotional, unreasonable, or lacking in proper mental capacity in any way.

The amendments in Bill C-7 would potentially allow her access to a medically assisted death, but under a new set of conditions. Instead of empowering Canadians to have the autonomy to make their choice, the power – nearly all of it – still lies in the hands of assessors, providers and practitioners.

One of the two independent MAID assessors who determines eligibility must have expertise in the condition that’s causing the person’s suffering. I am thankful we don’t live in a rural community where little specialized expertise exists or where access to it is subject to a waiting period of months or years. But even so, it’s still unclear whether such an expert exists for my partner’s specific condition and/or how that expert’s personal feelings about MAID might influence such a decision.

Under Bill C-7, there is also now a minimum of 90 days for the assessment of a MAID request. Justice Minister David Lametti refers to this not as a “period of reflection,” as it was called under the existing law, but rather a “period of assessment.” Regardless of what it’s called, this means a longer wait. Before, the “reflection period” was only 10 days.

Under the amended legislation my partner fulfills a criterion that will on one hand deem her suffering “intolerable,” and on the other, ask her to tolerate said suffering for at least another three months — with the potential outcome that she’ll still be denied MAID at the end of the assessment period. A cruel reward.

Minister of Justice and Attorney General David Lametti explains why the 90-day period mandated by the government for MAID is one of assessment, and not a period of waiting. (The MAID town hall was recorded March 5, 2020.) 0:55

As a caregiver, I am left here to watch.

I am powerless. I cannot cure her pain, nor can I stop her suffering. I hear her demands for MAID, but I cannot provide her with assistance in death. I also do not have any answers about why the government believes it is their decision — and not hers — that she continue living despite it being clearly against her will.

It has been a very, very long couple of years waiting for the government to advance, converse, and evolve on this legislation. The government’s rules on MAID have left her to suffer, for suffering’s sake. It is by miracle of her own strength and sheer determination that she is still here, and that I have not woken up one morning to discover that she’s attempted to take her own life.

In statements made to the media, I see our federal Justice Minister David Lametti and Health Minister Patty Hadju continue to use terms like “safeguards” to hide restrictions and “respect of individual autonomy” to hide exclusion. They say, “protect the vulnerable.”

To this, I say my common-law partner is the most vulnerable person I know. Look at what the government has done to her. The trauma they have forced her to endure is nearly unforgivable.

Canadians put their questions about MAID to the experts, including Federal Justice Minister, David Lametti. Hosted by The National’s Andrew Chang. 44:27

My experience is not unique. Many Canadian families are facing the same dynamics. There are cases of Canadians who have died by suicide after being denied a medically assisted death. These are stories that do not fit into the narrative the government has positioned around medical assistance in dying.

The undignified manner of these deaths is entirely avoidable, and these are only some of the cases we know about. How many have suffered, and are still suffering silently, is unclear.

From disabled Canadians wanting MAID access, to people with chronic pain, to those suffering with treatment-resistant depression and other forms of mental illness, the government’s message with the Bill C-7 amendments is, “We know better and we aren’t willing to grant you the autonomy to make your own choice.”

This brings us back to the Charter, Chapter 7, and the right to life, liberty, and security. I don’t remember seeing anywhere that Chapter 7 was optional. Why does the government think so?

The government and MPs on all sides have shown a lack of leadership on this issue, and seemingly refuse to acknowledge the consequences of their vote on MAID for those who are suffering.

The Quebec court decision that motivated the introduction of Bill C-7 was rendered in September of last year. The most recent extension provided by the Quebec Superior Court to revise the existing MAID policies has provided the government with a new deadline of Dec. 18, 2020. This is the second such extension, and will mark 15 months since the original court decision with no change produced as of yet.

As the government moves forward with the proposed MAID amendments and with no details on re-scheduling the parliamentary review that was originally planned for June, this speaks volumes for how our government views revising medical assistance in dying.

It is imperative that our elected officials consider the impact their restrictions, which they’ve falsely maintained are fair and balanced, have on real Canadians. Legislation carries with it consequences, and the failures of the last government’s attempt at equitable MAID cannot be repeated.

his is Canada’s opportunity to fix MAID. My family and others are watching intently.

Complete Article HERE!