This is how Claire is preparing her family (and herself) for her death

Claire Romeijn was 29 when her doctor gave her life-altering news.

Claire says she didn’t want to overload her daughters with ‘disastrous news’ when she found out she was terminally ill.

By Tahnee Jash

She had been experiencing severe abdominal pain three weeks after having a baby, but it wasn’t until her daughter was eight months old that she decided to find out what was wrong.

“When I finally had a colonoscopy and endoscopy, they couldn’t get the cameras through because the tumour was so large,” Claire says.

“It was a big shock to everybody.”

Following a diagnosis of bowel cancer, she underwent surgery and chemotherapy and for a period was cancer free — until she was back to see the doctor again.

“I got the second diagnosis that it was back, and I was now stage four,” Claire, who is now 33, says.

Without a cure and the cancer spreading to other organs in her body, Claire is now going through her last chemotherapy treatment available.

She spoke to ABC podcast Ladies, We Need to Talk about how she’s coping.

Talking about death with your children

As Claire was still processing the news, she knew she had to figure out how to tell her five daughters — in particular her eldest, who was 10.

She says she didn’t want to overload anyone with “disastrous devastating news” around being terminally ill.

So, the Sunday after receiving her diagnosis, Claire made fresh pancakes and told her children gently over breakfast that she was starting chemotherapy again.

“I said, ‘Mummy’s going to have to do chemo again’.

“My oldest was at the end of the table and she was very, very quiet, just processing it. [Then] she says, ‘Does that mean your cancer’s back?’ And I said, ‘Yes’.”

Claire says it’s been especially hard for her children and partner to process her diagnosis.

“[My eight-year-old] was crying [one] night and I said, ‘What’s wrong? And she said, ‘I don’t want a new mummy’,” Claire says.

“I said, ‘I will always be your mummy, that’s never going to change’.”

Clinical psychologist and director of the Death Literacy Institute, Kerrie Noonan, has spent her career helping people feel more comfortable talking about death.

She says it can be hard to explain it to children, especially when they’re young, but her advice is to talk openly.

“For young children, grasping death as a permanent thing is an important part of their grief,” Dr Noonan says.

Religion or spirituality can be a source of comfort when it comes to grief but helping children grasp the physical process is just as important.

“Often our inclination is to say to kids, ‘When I die, I’m going to heaven’,” Dr Noonan says.

“It’s not concrete enough for a young child to kind of understand.”

“So, [instead you might say], ‘When I die, my body stops working, I won’t have any pain anymore and my body will be buried’,” she says.

Claire’s still trying to work out the best way — and time — to tell her kids she’s terminally ill and says it’s been an overwhelming experience preparing her family for her death.

One thing that is helping her is creating special keepsakes for her daughters to cherish.

“My big girls will remember, I know they will but the five, three and one-year-old is a different story of what memories they’ll hold on to,” she says.

“I want to write a letter to them all individually, about how much I love them [and] funny little things their dad might not remember.

“I want to write a list of ‘Mummy’s advice’, for when they are older, but I’ll definitely be putting the aunties on the ‘period talk’ because I don’t trust their father,” she says, laughing.

Talking about death with your partner

Claire also worries about her husband and how he’s coping with all the changes.

“He’s not someone to dwell on the negative, so it’s really hard to get him to open up,” she says.

“We’ve had moments where we will grieve together, [but] he doesn’t talk about it, not even with mates.”

Avoiding discussion is a common way some people cope, but Dr Noonan says the best way through it is trying to being open with each other.

“I guess the first thing is to acknowledge just how bloody hard it is,” Dr Noonan says.

“[We think] ‘Oh she’s got enough to worry about, I can’t talk to her about how scared I am about the future, so I’ll just suck it up and keep going and same [goes] the other way’.

“Everyone’s protecting everyone, but no one’s actually talking and that can be one of the biggest barriers.”

After going through intensive treatments like chemotherapy, intimacy is often the last thing on a couple’s mind, but Dr Noonan says it could provide the comfort and sense of relief that the relationship is longing for.

“People may not want to feel like having sex as such, but they may really still have that great need to touch, connect and have comfort from that touching and connecting,” she says.

Claire and her husband find it hard to talk about the future, but something that’s helping them is focusing on the present.

“We focus on making memories,” she says.

“My husband gets through it by planning extravagant trips in his mind … he bought his own calendar to write down where we’re going and put [down] every country.

“[He] is super optimistic and it really kind of keeps me together,” she says.

‘I allow myself to be sad, but I don’t let it overcome me’

Claire’s been given a life expectancy date by her doctor, and she says there are days where she feels anxious about it.

“My oncologist ended my appointment with a ‘you better make holidays this year’ and that’s a real downer but it’s also a reality,” she says.

To help ease some of the anxiety, she takes antidepressants, but it’s her family who help her through those difficult days.

“I allow myself to be sad, but I don’t let it overcome me,” she says.

“I’ve got ive girls who need me, and they are the ones who make me get out of bed and try to keep [life] as normal as possible.”

Complete Article HERE!

My Grandfather’s Death Party Was a Final Gift to His Family

The end of life is often invisible, shut away in nursing homes or intensive-care units. There’s another way.

By Sara Harrison

My grandfather liked to stage a scene. He moved to California in 1935 to work in Hollywood, becoming a director for B-list movies and TV shows like “77 Sunset Strip” and “The Mickey Mouse Club.” Despite his work, he didn’t particularly care for film and didn’t own a TV until 1964. Even then he mostly used it to watch Dodgers games. What he liked was the process of making a show: reworking the script, setting the angles, being in charge.

Like so many in his generation, he was a multipack-a-day smoker; a Philip Morris cigarette hangs from his lower lip in nearly every photograph I have of him. He lived with emphysema for decades, maintaining his last sliver of healthy lung tissue through a combination of lap swimming, walking, Scotch and luck. But at 97 years old, he had flagging energy. No longer able to walk from his bedroom to the kitchen without stopping to catch his breath, he rigged up an oxygen tank that allowed him to roam the length of his home. Tubes followed him up and down the corridor.

For a brief moment, at my grandfather’s party, I got to slow down the inevitable, to be with the people I grew up with, in the place we held sacred and dear.

Death is, famously, one of the few certainties in this life. It’s also a reality that doctors, patients and families tend to avoid. In a recent report, The Lancet Commission on the Value of Death notes that today death “is not so much denied but invisible.” At the end of life, people are often alone, shut away in nursing homes or intensive-care units, insulating most of us from the sounds, smells and look of mortality.

Not so for my grandfather. Though he didn’t rush headlong into the hereafter, he didn’t want to wait for his faculties to fail one by one. He wanted to die with a modicum of independence, with hospice care.

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On an unseasonably warm Los Angeles day in May 2011, a cast of characters — his children, grandchildren and friends — assembled at his home, ready to play their part in the last act of his life. I was a college junior at the time, required to read Coleridge’s “Kubla Khan” for class that week. I found it in an English poetry collection of my grandfather’s and read sitting on a sagging couch, intermittently distracted by family members who, one by one, came in and asked what I was doing. They’d smile and recite the opening lines: “In Xanadu did Kubla Khan/A stately pleasure-dome decree:/Where Alph, the sacred river, ran/Through caverns measureless to man/Down to a sunless sea.”

What ensued was a five-day tropical vacation. My grandfather couldn’t stand the air-conditioning, so we wore bathing suits most of the day and paged languidly through withered photo albums. I floated in the sacred waters of my childhood — the swimming pool — and harvested lemons from the prolific backyard tree. When 6 o’clock rolled around, my grandfather would ask, “Who’s pouring me a Scotch?” Cocktails, cheese, olives and stale water crackers appeared. We listened to classical records and told stories and took turns cooking dinner. But just as Coleridge’s vision faded, interrupted by a person from Porlock, our reverie was splintered by closed-door meetings with hospice nurses and conversations with doctors, who could attest my grandfather had a sound mind and a failing body and was eligible for end-of-life care.

However perverse it may sound, that death party — as my sister and I came to call those five days — remains one of the most profound experiences of my life. For a brief moment, at my grandfather’s party, I got to slow down the inevitable, to be with the people I grew up with, in the place we held sacred and dear. Amid that joyful reverie, I had time to sober up and confront the simple reality that my grandfather wanted to die and that everything would change. I saw that the man who had commanded movie sets and TV crews now rarely left his house. That his sweaters hung loose on his stooped shoulders, and that his rosebushes withered with neglect. That things were already changing, whether I was ready for it or not.

People often talk about death as if it’s the worst thing that can happen to someone. As if it’s something that must be avoided at all costs. Better to age, however painfully, however diminished, than to ever admit that we are mortal. But at the end of a long, full life, my grandfather was done. He died with power and agency, love and support. To have that death, he had to acknowledge and embrace his mortality. At our death party, he gave his family a chance to accept that fact, too.

More than a decade later, my parents are discussing their own plans, debating whether to be cremated or buried. My dad calls to talk about what I want. Would I visit their grave sites? Would that be meaningful? There are no monuments for my grandfather, whose body was eventually cremated and scattered at Evergreen Cemetery in Los Angeles. When I miss him most — when I married, or when my nieces were born — I pay homage with a cocktail, a toast and a memory. I think about one evening during the party when, as the room hummed with humans, he held my head in his hands. A few days later, he had his usual Scotch, went to bed and died. In my memory, this moment — the moment when we looked at each other, when we said I love you and when we let each other go — lives on. It comforts me when I pass through caverns of sadness and am marooned in sunless seas of grief. I tell my parents I don’t need them to have a grave site.

Complete Article HERE!

With its queen gone, Britain ponders how to discuss death

A woman reacts next to flowers and messages for Queen Elizabeth II at the Green Park memorial, near Buckingham Palace, in London, Sept. 10, 2022. Because she reigned and lived for so long, Queen Elizabeth II’s death was a reminder that mortality and the march of time are inexorable.

By John Leicester 

Where goes Queen Elizabeth II, there — inevitably — go each of us and all those we love.

Because she reigned and lived for so long, seemingly immutable and immortal, the death of the British monarch after 70 years on the throne and 96 years of extraordinary life was a reminder, in Britain and beyond, that mortality and the march of time are inexorable, waiting for neither man nor woman, even a royal.

That kernel of wisdom from Elizabeth’s passing, the last of many she dispensed during her lifetime, is uncomfortable, even difficult, for the living. The reality of death — the queen’s being, by extension, a glimpse at the eventuality of their own — is part of the reason why some Britons mourning the only monarch most have known are feeling a complex soup of emotions.

Some have called bereavement counselors for solace and said her departure has rekindled grief for others they loved and lost. And Britons acknowledge that they sometimes struggle with the emotions of loss. “We don’t necessarily do grief and bereavement that well,” says Lucy Selman, a professor of palliative and end-of-life care at Bristol University.

British bereavement experts are hoping, however, that the queen’s death and its manner — at home, with family, in her beloved Balmoral Castle — might also spur a national conversation about the sometimes awkward relationship that Britons have with dying. In the process, the experts hope, it might prompt them to better prepare for the inevitable.

“If we are going to die in a way that we hope is peaceful, comfortable, and satisfying for us, we have got to do what the queen did: Recognize that it is going to happen at some point and put some plans in place for what we want and what we don’t want to happen,” says Kathryn Mannix, author of “With the End in Mind: How to Live and Die Well.”

Mannix has witnessed thousands of deaths in her 30-year career as a palliative care physician. She says it became clear in the last two years of Elizabeth’s life that she was dying. She recognized familiar patterns — in the slowdown of the habitually frenetic queen’s schedule and the preparations she made.

In her final months, Elizabeth made it known that when now-King Charles III succeeded her, she wanted his wife, Camilla, to be known as “Queen Consort.” And she lingered to see her grandson, Prince William, and his wife, Kate, relocate their family from central London to a royal cottage in Windsor.

One of her very last actions as queen was to ask Conservative Party leader Liz Truss to become her 15th and, as it turned out, last prime minister. That audience was last Tuesday, Sept. 6. It was the first time in Elizabeth’s reign that she’d been away from her official London residence, Buckingham Palace, for a prime ministerial appointment. Instead, she stayed in Balmoral, her Scottish vacation home, and Truss traveled to her.

Duty done, the queen died two days later. Mannix was reminded of other deaths she encountered in her medical career, of people who clung to life “to hear the news that a baby has been born or an exam has been passed” and who then relaxed “very quickly into dying.”

“There is nothing at all disrespectful about recognizing that even our monarchs are mortal and that what happens at the very ends of people’s lives is a recognizable pattern,” Mannix says. “We perhaps can use this as an occasion to start to think about knowing the pattern, being able to recognize the pattern, being able to talk to each other about the pattern — not being afraid of it.”

>Described by the government as “a period of time for reflection,” the 10 days of national mourning decreed for Elizabeth’s passing are also, unavoidably, giving dying, loss and bereavement starring roles in the wall-to-wall media coverage of the queen’s life and times.

Bereavement experts say the rituals of communal grieving and the mourning period — practically an age in the swipe-and-tap era of short attention spans — are an exceptional and important opportunity for Britons to adjust to the loss of a queen and the gaining of a king, and to process the emotions and anxiety that enormous change sometimes brings.

For young people, “this might be first time that they learn about the finality of life and what that means,” says psychologist Bianca Neumann, the head of bereavement at Sue Ryder, a British charity that offers support through terminal illness and loss.

“We never really look at the end of life like that, unless we have to,” she says. “It would be nice as a nation if those conversations could become more mainstream.”

Psychotherapist Julia Samuel, who was a close friend of the late Princess Diana, is urging Britons to pause and digest their loss. Posting on Instagram, she said that “if we just keep going and doing what we normally do, our brain isn’t given the information to let us know that something very big has happened.”

“The task of mourning is to adjust to the reality of a death,” she says. “To do that, we need to let our brain kind of slow down.”

To be fair, British conversations about death and loss have taken place for centuries. In “Hamlet,” Shakespeare had his prince muse famously about the human condition, clutching the skull of Yorick, a court jester.

“Alas, poor Yorick! I knew him,” Hamlet mourns. “Where be your gibes now? Your gambols? Your songs?”

>Britons also surprised themselves and the world, casting off their reputation as a nation of stiff upper lips, with a deluge of public tears over the death of Princess Diana in 1997.

“The pendulum went from the one side to the other,” says Adrian Furnham, a London-based professor of organizational psychology at the Norwegian Business School and author of “Psychology 101: The 101 Ideas, Concepts and Theories that Have Shaped Our World.”

“It’s now much more acceptable, and indeed a lot more healthy, to ‘let it out,’” he says. “That has changed in this country, because there was a time when that was distinctly a sign of weakness.”

Still, Britons concede that they could do better in helping others and themselves through bereavement. Sue Ryder last year launched a “Grief Kind” campaign, to help people find words when those around them lose loved ones.

Selman is a founding director of the “Good Grief Festival,” started during the COVID-19 pandemic to break taboos around dying. She hopes mourning for the queen will produce “a bit more awareness and an ongoing discussion about bereavement and loss and our social attitudes towards it.”

“There’s a conversation to be had about what a good death is,” she says. “And what we can do to try and ensure that we have the death that we want.”

Complete Article HERE!

I have terminal cancer.

A houseplant is helping me confront mortality.

David Meyers has placed his lucky bamboo in a living room window. He has found comfort in caring for the plant since his brain cancer diagnosis.

Watering the bamboo, as small an act as it was, connected me to a core part of my old identity and taught me I could still be a caregiver

by David Meyers

My wife and I usually don’t keep houseplants. Anything in pots gets either overwatered or underwatered. After my diagnosis with glioblastoma — a terminal brain cancer with a prognosis of little more than a year to live — I loved the idea of having something new and green and alive around us.

When my friend Mitch gave me a lucky bamboo plant in a deep-green pottery bowl with three pencil-size stalks braided together, we decided to place the plant in the living room window across from the couch where I spent much of each day.

I smiled when I looked over the rim of the mug of coffee Hannah brought me each morning.

I told Hannah I wanted to care for the plant myself. When it didn’t immediately turn yellow or brown or lose all of its leaves, I was pleasantly surprised.

Tending to the plant gave me a sense of accomplishment at a time when I sometimes felt useless. Glioblastoma limited my ability to walk, and the treatment left me fatigued, making it hard for me to accomplish everyday tasks.

Being dependable again

As a physician, I was used to being the one who provided care, not the one who received it. Since my diagnosis in August 2018, far too often, it seemed, I had to rely on help from other people. The enormous change left me feeling adrift and unsettled. Watering the bamboo, as small an act as it was, connected me to a core part of my old identity and taught me I could still be a caregiver. Plants and people could still depend on me.

Over the next few months, I recovered from surgery and completed radiation and the first round of chemotherapy. Even after I returned to work, I continued to care for the plant. Soon, it had nearly doubled in height and its leaves were shiny and lush. Both the tree and I were thriving.

Then, mysteriously, it began to show signs of stress. I increased my watering, then decreased it. I nestled coffee grounds into the soil. I fed it commercial plant food. No matter what I did, the leaves kept browning and dropping to the floor. I grew more and more frustrated and uneasy.

“I can’t even care for a simple plant!” I yelled. “I’m failing!”

Hannah reminded me that we’d seen houseplants die before. She asked me why I was getting so worked up about this particular one.

“If my lucky bamboo dies,” I blurted out, “I might die, too!”<

I couldn’t shake the feeling that the plant had become a symbol of my own precarious health.

Solace and control

Identifying with the green and growing plant had offered me solace. Now that the tree was struggling, I felt increasingly fearful. Its shriveling leaves, I worried, might signal the recurrence of my brain tumor.

I realized I had wrongly connected my careful nurturing of the plant — something over which I had at least some control — with my own survival — something over which I had no control.

When my tumor inevitably returned, it would not be because of any failure on my part — not because I didn’t atomize essential oils in my office, not because I ate sugar occasionally and certainly not because I failed to keep this plant alive.

As my anxiety lessened, I began to pore over online tutorials to help me figure out how to care for my bamboo. Following the instructions, I transplanted the tree to a larger pot, untangling its roots to give it room to grow. When it was back in the sunny window, we both began to thrive again.

Whenever I look at the tree with its braided stalks in its new pot, I make a point to think of Mitch and the other people who have cared for and supported me. If the lucky bamboo outlives me, I hope it will comfort Hannah and remind her that our large community will continue to nurture her after I am gone.

Complete Article HERE!

‘So many people are terrified of death.’

Death doulas provide end-of-life support.

Need emotional or spiritual support at the end of life? Hire a death doula.

By Jessica Hall

When Diane Button’s grandfather died at 85, he had a smile on his face and a sense of peace that made her want to learn his secret.

Being with him in the final hours of his death after watching his life caring for others as a doctor inspired Button to get a master’s degree in counseling and start volunteering with hospice programs. She then trained as a ‘death doula,’ wrote books about living well, and now teaches at the end-of-life doula professional certificate program at the Larner College of Medicine at the University of Vermont.

“It wasn’t so much to learn about dying as it was to learn about living well and ultimately dying well,” Button said.

Button is part of a growing number of so-called ‘death doulas’ who provide nonmedical care and support for people who are dying. Similar to the dynamic between a midwife and a birth doula, a physician or hospice caregiver would provide medical care at the end of life, while a death doula provides emotional and spiritual support and help to the patient and the family and friends.

There’s currently no licensing, no industry standards and no insurance reimbursement for death doula services. Doulas can be volunteers or get paid out of pocket.

Without licensing requirements, it’s difficult to track the number of people providing end-of-life support doula services. But since its inception in 2017, the National End-of-Life Doula Alliance has grown to 1,350 members in 49 states (all except South Dakota) and 13 countries.

Karen Reppen, an end-of-life doula and a member of the board of the National End-of-Life Doula Alliance, attributes the growth in awareness and numbers of doulas, in part, to COVID, when people often died alone, as well as the growth of the hospice movement and the sheer numbers of people closer to dying as baby boomers age.

“More people are willing to explore options beyond the hospital and what the medical system can provide,” Reppen said. “We no longer have multigenerational homes, communities may not be as tight knit as they once were, everyone is working – caregiving is a huge, huge challenge. Nonmedical support is needed to survive death with some grace.”

“There’s incredible need for support when you’re a caregiver and your loved one is dying. Whether it’s to simply walk the dog, go grocery shopping, get a few minutes to yourself, get help in navigating the medical information – there’s so many reasons to have some support,” Reppen said.

“Caregivers are very strained. The need for compassionate, skilled people to hold that space in our progressively isolating society is so valuable,” Reppen said. “So many people are traumatized and terrified of death. Even people with family and friends surrounding them may need help. Really, there is no other thing that we’re all guaranteed to share than the fact that we’re going to die.”

Robert Gramling, a palliative care physician and a core faculty partner for the University of Vermont doula program, agreed that the pandemic created an opportunity to talk about death in a way society hadn’t before.

“It can be terrifying to be sick. The COVID pandemic brought into sharp relief that death is part of life. The tragedy of social distancing has sharpened our focus on the space of being alone and isolated. It catapulted us into a public health crisis of loneliness and isolation. Our world is thirsty for this,” said Gramling.

The program at University of Vermont, which is online, is just one certificate program offered around the country. It attracts people from all stages of life, from diverse backgrounds – social workers, chaplains, hospice workers, family caregivers – all with the central desire to learn about death and dying.

“There will be a tipping point where it becomes more accepted. I think with the pandemic the world is valuing more this idea of ‘I want to be known. I want to be dignified and accepted,’” Gramling said. “We’re bubbling toward a tipping point that talking about death becomes part of life. Our world is becoming more open.”

“The doulas’ role is to fill the gaps any time people are feeling lonely or not heard. Anywhere along the course of a serious illness doulas can provide space with nonjudgment,” Gramling said.

Doulas can help younger, healthy people with advance directives, sit vigils for the dying or create legacy projects of stories to pass down to other generations.

Button said more doctors are referring patients to end-of-life doulas once medical needs can’t be met anymore.

“The time has come for doulas to emerge. The pandemic opened up the conversation about death and dying. So many people were impacted by it. The pandemic opened the door a crack and gave them a glimpse of mortality,” Button said.

“It’s an honor to be invited to the bedside of the dying,” Button said. “It’s emotional. It’s deep work of the heart.”

Complete Article HERE!

Three things I have learned about end-of-life care from treating elderly couples with cancer

Experience provides fortitude, equanimity and perspective. Not everyone wants to live forever

‘The mission of a “geriatric oncology” service is to treat the cancer in the context of the whole patient.’

by

“We are happy and sad to see you again. You looked after Dad years ago.”

I kick myself for not registering the connection, although I only met him during a brief and disastrous stint in hospital.

The complications of cancer treatment had kept mounting until his wife was forced to admit her 85-year-old husband to hospital despite his protestations. His memory had faded and his moods turned volatile. He died in hospital, captious and discontent. I now recall the exhaustion of the family and their guilt-ridden attempts to reconcile with his end.

Some of my work involves seeing cancer patients in their 80s and 90s. The mission of a “geriatric oncology” service is to treat the cancer in the context of the whole patient; while it can be said that all cancer care ought to share this mission, elderly patients are a particularly vulnerable group, with little margin for misadventure. Since two in five people will receive a cancer diagnosis by the age of 85, there have been several occasions when I have treated both husband and wife.

Here are three things that I have learnt from looking after my most elderly patients.

1. Their goals differ

While younger patients compare their treatment to what someone else is having or bring in an overseas recommendation, and (understandably) want to leave no stone unturned, even at the cost of significant toxicity, my oldest patients often have a different goal – to preserve quality of life and maintain independence, even at the cost of survival.

This is especially true when a person is both patient and caregiver.

Co-dependant elders can get by happily in their own home but the moment one stumbles, both are in jeopardy. I frequently meet people who base decisions on combined harm rather than individual good. Interestingly, the people who sometimes struggle to comprehend this are their doctors who are taught to focus on cure.

Many patients who have accompanied a spouse through cancer and end-of-life care have used the opportunity to reflect on their own choices.

I met an octogenarian who declined chemotherapy after caring for his wife who endured recurrent hospitalisation before dying. The same day an elderly woman insisted she would rather “die on the table” than live a life of regrets, as her husband did after he rejected surgery.

One of my most memorable patients was a 90-year-old man who refused an operation because the resulting diarrhoea would involve him negotiating a steep staircase to use the bathroom more frequently. Given the choice of moving out of his beloved home and living longer, he didn’t think twice. I have seldom seen a happier man exit the hospital without a cure.

I also meet overwhelmed patients who relinquish decisions to professionals but, when given the chance (more on this later), most patients will explicitly state what matters to them and make concordant decisions. A long life, necessarily including experiences of sadness and mortality but also inspiration and hope, has given them fortitude, equanimity and perspective. Not everyone wants to live forever, especially if the life is messy.

2. It’s hard on the children

Elderly patients have middle-aged children in the prime of their careers or out of the workforce for important reasons. Apart from tackling a mortgage, navigating workplace tensions and looking after themselves, they are juggling dependent children and vulnerable parents. They are carers, cooks, interpreters and drivers. In a multicultural community the “blessings and curses of filial piety” are on full display, and I worry that I am rarely useful.

Often, there is sibling conflict, usually because one sibling is doing “all the work”. Then there are the expectations of the carer that are hard to meet.

Can I see their parent on their day off? No, the system is inflexible. Can I organise transport? No, there is no funding. Can I avoid issuing last-minute appointments? No, it’s out of my control. Can I expedite aged care services? No, they must join the queue.

I wish the system understood the toll that illness exacts on the whole family.

One of the hardest things is to witness children seeing one parent succumb to cancer, only to repeat the experience. The despair of anticipatory loss is palpable but, if there is one glimmer of hope, it is the benefit of hindsight.

Families who insisted on intensive care at the end of life acknowledge its futility, those who doubted palliative care recall its worth. There is irony in the hope that the next time will be “better”.

3. We must do better

When illness is regarded as an anomaly, the emphasis is on fixing the problem, averting loss and restoring normality.

Every patient deserves optimal care but, when the conversation begins and ends with response rates and survival curves, it is a missed opportunity to respect the whole person, honour their wisdom, longevity and contribution to society and let them contemplate a twilight that contains dignity and comfort.

The power imbalance between doctors and elderly patients is especially pronounced.

I find it confronting to hear these patients lament that they are undertaking onerous surgery or toxic chemotherapy because they don’t have a choice. Some are confounded to learn that they always have a choice, even if doctor and patient agree to disagree. For many people of their generation, advocating for their right to be heard is unthinkable. For those who come from culturally and linguistically diverse backgrounds, this feels impossible.

No doctor who recommends an intervention in good faith wants to hear that a patient feels coerced, so we must choose language that opens the door to shared decision-making and correct the dismal lack of research on the needs of elderly patients. It is an indictment of medicine if the patient who really wants to say no ends up saying yes.

My elderly patient decides against treatment but requests periodic consultation to allow her to change her mind. All things considered, she says her work on Earth is done and she greatly misses her husband. At this, the daughter sheds a tear, but I can already see that this deliberate decision-making is better than what went before.

We won’t cure the patient but we will have honoured the person. A victory for the patient is a victory for medicine.

Complete Article HERE!

The pandemic changed what it means to have a ‘good death’

By

When considering what a “good death” is, most people in North America would likely say something along the lines of living to at least 75, and painlessly passing away at home in their sleep would constitute a good life and, most importantly, a good death. One of the key features of the “good death” narrative is being at home.

So, what do we mean by home and how important is the idea or feeling of “being at home” to a good death?

Home is more than just a structure. It is textures, smells, sounds and atmosphere. It is a sticky table that brings you back to your first day of school when you held your brother’s hand as you both walked to the bus or a smell that reminds you of the first time you baked cookies with your grandmother and danced around the kitchen singing along to Cher.

Home is nothing, but everything, especially at the end of life.

Death used to be treated as a public event, but as our society has become more individualistic, it has shifted to being a matter best dealt with in private by ritual specialists — like an embalmer or funeral director — and close family members.

As the home is thought of as being the most intimate private space we inhabit, it should not be surprising that most people wish to seek “home” in the dying process. To die outside of home is seen to be a failure — a bad death.

The pandemic changed the lives of many people. Isolated from friends and family, away from home, many people didn’t have access to a “good death” — especially those in care homes. So its important to reflect back on this idea of a “good death” and how we understand what home and family mean.

No longer an ‘uncomplicated’ death

Since the 1920s and ‘30s the government has increased its control over funerals and end-of-life treatments. This became an even greater concern in the 1950s and ’60s, when advancements in medical care meant that people who would have previously had an “uncomplicated” death now found themselves entangled in, and dependant on medicine.

With an aging population and medical advancements, the reality is that as people age, they are likely to find themselves being put in the role of “patient,” where their death will be medically mediated.

This means that even if they are able to be at home, their health is being medically determined, with the end result being that the amount of control they have over their own lives and final care has become complicated.

The ideal narrative of living to 75 and passing away at home quietly and painlessly while asleep is becoming increasingly difficult to realize.

A person stands behind square windows, wearing scrubs, wiping down a desk
A worker is seen cleaning surfaces inside a long term care home in Vancouver.

No longer at home

The fear of not having a “good death,” by dying at home among family members, has become a very real concern — especially during the pandemic.

Before COVID-19, people who lived in places like care homes would still be invited to gatherings or enjoy the occasional visit from a loved one. Their social death was isolating, but not devastating.

During peak restrictions, senior living and care facilities were locked down. This resulted in family members feeling helpless and those living in care facilities feeling hopeless.

The shutdowns, intended to keep them safe, caused many to long for a home that wasn’t restricted — some even opted to choose medically assisted death in the face of additional lockdowns.

An evolving ‘good death’

In the Netherlands, home is thought of as not just being a physical space, but is seen as a state of being in the family.

Isolated from their families during the pandemic, many individuals found themselves no longer being in the family. The social death they were experiencing was felt to be far more painful than any fear or concern they had about their own biological death.

As we reflect on what life means to us in this post-pandemic shuffle, we need to also contemplate what a “good death” is. For some, that may mean opting for quality of life and control over how, when, with whom and where it ends through end-of-life programs like MAID (Medical Assistance in Dying).

The pandemic will forever change how people understand what home and family means, what their role within the family and home is, and how to be in the family and in the home, in whatever form that may be, for their passing.

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