Can we choose the moment we die?

— So many stories of dying people holding on until a loved one reaches the bedside or leaves the room make some think we may have some control over when we pass away

by Eve Glicksman

The man had promised his betrothed daughter he would walk her down the aisle. So, at the recommendation of the doctor treating him for advanced lung cancer, the wedding date was moved up by two months.

“He was a man of his word,” says Charles von Gunten, the oncologist treating him. It took enormous energy for his bed-bound patient to dress for the occasion, held in a hospice facility, and accompany his daughter down the aisle in a wheelchair, von Gunten says.

That evening, after the reception, the father of the bride died.

You may have heard a version of this story before. A parent hangs on to life until a child arrives. Or against all medical odds, someone lives to see the birth of a grandchild. Or family members sit by the bedside for two days and the loved one dies when they step out for lunch.

Can people choose the moment they die?

Lizzy Miles, a hospice social worker in Columbus, Ohio, sees it all the time. Miles’s own great aunt died “the very second her chaplain walked in the room,” she said. Her great aunt, of strong faith, had been nonresponsive and inexplicably alive for days. In hindsight, the family believes she was waiting for the chaplain.

“All these things happen [often] enough that those who work in the field aren’t surprised,” says von Gunten, a pioneer of palliative medicine in the 1990s and editor in chief of the Journal of Palliative Medicine.

One theory is that a hormonal stimulus may enable us to hang on until a special event or loved one’s arrival. “What people will do for one another in the name of love is extraordinary,” von Gunten says. “I think of it as a gift when it happens.”

But there are limits. To be clear, no scientific evidence exists that we can control the moment we die. If we could will our death, there would be no right-to-die movement or legal battles over euthanasia.

‘Just done living’

Felice LePar, an oncologist with Alliance Cancer Specialists in the Philadelphia area, also believes that people may have some sway over the timing of their death. LePar cautions families that patients sometimes die quickly after deciding on hospice; this, despite no change in their medical condition.

“We can’t fully understand it,” she says. “Some people decide that they are just done living.” Other times, when reviewing lab tests, she wonders how a patient can still be alive.

“My rule of thumb is that when someone says ‘I think it’s soon,’ I listen,” von Gunten says. “They tend to know more than I do” about when they’re dying.

Few scientific studies have explored our last moments of life. Protectiveness and respect for the deceased figure into that. Dying is seen as sacred across all cultures and getting approval from ethical review boards for such studies is difficult, von Gunten says.

Questions about potential harm to participants and intrusiveness arise, Miles add. “Do we bother people while they’re dying to ask questions?” she says. “This is a tender moment for people.”

Sociologist Glenys Caswell in Nottinghamshire, England, a self-described death studies scholar, has studied people who have died alone and stresses that it is not always sad.

“We all want different things in dying as we do in our living,” Caswell says. “Some [who are dying] don’t want people fussing over them or want to be alone when they aren’t feeling well. Others don’t want to distress their family.”

The hospice-at-home nurses whom Caswell interviewed during her research believe we have some measure of control over death after watching many patients die after loved ones left the room. “Hearing voices may be what was holding them on to life,” Caswell says. When the family leaves, they are able to relax and let go, she says.

Protective gesture

Waiting to die until people leave the bedside can be a protective gesture to spare loved ones who might not cope well, Miles says.

“It seems to happen most often when the patient is a parent,” she writes in one of her Pallimed blog posts. Her mother died when Miles took a short break to shower. The social worker says she felt guilty about that for years but learned to respect what seemed like her mother’s choice and personality. “Don’t project your own beliefs about what makes a good death,” Miles says she advises others who experience this.

LePar says people with a terminal illness often think more about the people they are leaving behind than about themselves. They do what they think their family wants, she says, and do not want to be a burden.

That’s why standard advice often includes giving permission to a loved one to die. “That reassurance can help people on both sides let go in peace,” von Gunten says.

“ ‘You’ve done what you need to do. We’re all right,’ ” Caswell suggests as an example of what to say.

Miles sees it differently, however: “If it is fear that is keeping a patient lingering, telling them it’s okay to let go may put unnecessary pressure on them to go before they are ready.”

An awareness of surroundings, people

How much do people in a nonresponsive state know about what’s going on around them? Researchers used electroencephalography to measure the brain response of dying hospice patients to voices and sounds, before and after they lost consciousness.

The study found evidence of the brain responding to sound stimuli, supporting the idea that patients may know when someone is in the room. The researchers could not confirm, however, whether the patients understood what they were hearing or were able to identify voices.

Hospice workers refrain from saying people are “unconscious,” preferring the term “nonresponsive,” Miles writes on her blog. Even actively dying patients seem to have an awareness of what’s going on in the room, she says. Minute gestures — the fluttering of an eye, a swallow or a head turn — can be a response. One patient started breathing along with the music she put on, “almost like he was conducting,” she recalls.

I am convinced my father could hear me while dying despite his deep-sleep appearance. He squeezed my hand once and there was an upward head tilt when I said I’d take care of my mother. Then, a funny, bemused lift of the brow when I said I would write about him.

More convincingly, I had been updating my father regularly on my brother and sister-in-law’s journey to be there as I received word in texts — the flight delay, rental car line, traffic. Within 15 minutes of my brother’s arrival, my father died after holding on, nonresponsive, for 16 hours.

Death is not well-understood

“It’s impossible to know, let alone prove or disprove,” says Sam Parnia, about whether we can influence our time of death. Parnia is an expert in the scientific study of cardiac arrest and death and associate professor of critical care medicine at New York University Grossman School of Medicine.

What Parnia is sure about from his research is that death is not a fixed moment and that it is not well understood. Parnia has studied thousands of testimonies from people who were resuscitated after being considered dead. They consistently described feeling conscious, lucid and aware of what was going on after their heart stopped.

“Calling the time of death when the heart stops beating and the body and brain stop functioning reflects social convention rather than the science of what is happening to the body biologically,” Parnia says. “Studies have shown categorically that our brain cells do not die for many hours after we die.”

Von Gunten advises people to behave around the dying the same as always — not being afraid they will break if you hold them, for example.

“You don’t have to keep children quiet and lights don’t have to be dimmed,” he says. “Whispering outside the door is the worst thing you can do if that person always wants to know everything.”

Ideally, the dying person will have talked to family and friends about their end-of-life wishes beforehand, Caswell says. Who do you want at your bedside, or do you prefer solitude? Do you want to listen to a cherished symphony during your last hours or have someone read a favorite poem? It’s a hard conversation to have but everyone benefits from that openness, Caswell says.

Dying is the last thing you do in life. Why shouldn’t it be exactly as you want it, and maybe even the moment you want it.

Complete Article HERE!

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!

Shift in Child Hospice Care Is a Lifeline for Parents Seeking a Measure of Comfort and Hope


Hospice nurse Raul Diaz checks Aaron Martinez’s vital signs. Despite his mom’s seemingly healthy pregnancy, Aaron was born with most of his brain cells dead, the result of two strokes and a massive bleed that occurred in utero.

By Bernard J. Wolfson

When you first meet 17-month-old Aaron Martinez, it’s not obvious that something is catastrophically wrong.

What you see is a beautiful little boy with smooth, lustrous skin, an abundance of glossy brown hair, and a disarming smile. What you hear are coos and cries that don’t immediately signal anything is horribly awry.

But his parents, Adriana Pinedo and Hector Martinez, know the truth painfully well.

Although Adriana’s doctors and midwife had described the pregnancy as “perfect” for all nine months, Aaron was born with most of his brain cells dead, the result of two strokes and a massive bleed he sustained while in utero.

Doctors aren’t sure what caused the anomalies that left Aaron with virtually no cognitive function or physical mobility. His voluminous hair hides a head whose circumference is too small for his age. He has epilepsy that triggers multiple seizures each day, and his smile is not always what it seems. “It could be a smile; it could be a seizure,” his mother said.

Shortly after Aaron was born, doctors told Adriana, 34, and Hector, 35, there was no hope and they should “let nature take its course.” They would learn months later that the doctors had not expected the boy to live more than five days. It was on Day 5 that his parents put him in home hospice care, an arrangement that has continued into his second year of life.

The family gets weekly visits from hospice nurses, therapists, social workers, and a chaplain in the cramped one-bedroom apartment they rent from the people who live in the main house on the same lot on a quiet residential street in this Inland Empire city.

A photo shows two nurses attending to 17-month-old Aaron Martinez while his mother, Adriana Pinedo, holds him.
Adriana Pinedo holds her son, Aaron Martinez, during a visit with hospice nurses Raul Diaz (left) and Shannon Stiles. Pinedo describes the weekly hospice visits from nurses, therapists, social workers, and a chaplain as “our lifeline.”

One of the main criteria for hospice care, established by Medicare largely for seniors but also applied to children, is a diagnosis of six months or less to live. Yet over the course of 17 months, Aaron’s medical team has repeatedly recertified his hospice eligibility.

Under a provision of the 2010 Affordable Care Act, children enrolled in Medicaid or the Children’s Health Insurance Program are allowed, unlike adults, to be in hospice while continuing to receive curative or life-extending care. Commercial insurers are not required to cover this “concurrent care,” but many now do.

More than a decade since its inception, concurrent care is widely credited with improving the quality of life for many terminally ill children, easing stress on the family and, in some cases, sustaining hope for a cure. But the arrangement can contribute to a painful dilemma for parents like Adriana and Hector, who are torn between their fierce commitment to their son and the futility of knowing that his condition leaves him with no future worth hoping for.

“We could lose a life, but if he continues to live this way, we’ll lose three,” said Adriana. “There’s no quality of life for him or for us.”

Aaron’s doctors now say he could conceivably live for years. His body hasn’t stopped growing since he was born. He’s in the 96th percentile for height for his age, and his weight is about average.

His parents have talked about “graduating” him from hospice. But he is never stable for long, and they welcome the visits from their hospice team. The seizures, sometimes 30 a day, are a persistent assault on his brain and, as he grows, the medications intended to control them must be changed or the doses recalibrated. He is at continual risk of gastrointestinal problems and potentially deadly fluid buildup in his lungs.

Adriana, who works from home for a nonprofit public health organization, spends much of her time with Aaron, while Hector works as a landscaper. She has chosen to live in the moment, she said, because otherwise her mind wanders to a future in which either “he could die — or he won’t, and I’ll end up changing the diapers of a 40-year-old man.” Either of those, she said, “are going to suck.”

While cancer is one of the major illnesses afflicting children in hospice, many others, like Aaron, have rare congenital defects, severe neurological impairments, or uncommon metabolic deficiencies. 

“We have diseases that families tell us are one of 10 cases in the world,” said Dr. Glen Komatsu, medical director of Torrance-based TrinityKids Care, which provides home hospice services to Aaron and more than 70 other kids in Los Angeles and Orange counties.

A photo shows Aaron Martinez sleeping in a crib.
Aaron Martinez sleeps in the bedroom he shares with his mother and father in Pomona, California.

In the years leading up to the ACA’s implementation, pediatric health advocates lobbied hard for the concurrent care provision. Without the possibility of life-extending care or hope for a cure, many parents refused to put their terminally ill kids in hospice, thinking it was tantamount to giving up on them. That meant the whole family missed out on the support hospice can provide, not just pain relief and comfort for the dying child, but emotional and spiritual care for parents and siblings under extreme duress.

TrinityKids Care, run by the large national Catholic health system Providence, doesn’t just send nurses, social workers, and chaplains into homes. For patients able to participate, and their siblings, it also offers art and science projects, exercise classes, movies, and music. During the pandemic, these activities have been conducted via Zoom, and volunteers deliver needed supplies to the children’s homes.

The ability to get treatments that prolong their lives is a major reason children in concurrent care are more likely than adults to outlive the six-months-to-live diagnosis required for hospice.

“Concurrent care, by its very intention, very clearly is going to extend their lives, and by extending their lives they’re no longer going to be hospice-eligible if you use the six-month life expectancy criteria,” said Dr. David Steinhorn, a pediatric intensive care physician in Virginia, who has helped develop numerous children’s hospice programs across the U.S.

Another factor is that kids, even sick ones, are simply more robust than many older people.

“Sick kids are often otherwise healthy, except for one organ,” said Dr. Debra Lotstein, chief of the division of comfort and palliative care at Children’s Hospital Los Angeles. “They may have cancer in their body, but their hearts are good and their lungs are good, compared to a 90-year-old who at baseline is just not as resilient.”

All of Aaron Martinez’s vital organs, except for his brain, seem to be working. “There have been times when we’ve brought him in, and the nurse looks at the chart and looks at him, and she can’t believe it’s that child,” said his father, Hector.

A photo shows a nurse giving 17-month-old Aaron Martinez medicine via an oral syringe.
Hospice nurse Shannon Stiles gently administers Aaron Martinez an oral medication. Many hospice organizations are reluctant to take children, whose medical and emotional needs are often intense and complex.

When kids live past the six-month life expectancy, they must be recertified to stay in hospice. In many cases, Steinhorn said, he is willing to recertify his pediatric patients indefinitely.

Even with doctors advocating for them, it’s not always easy for children to get into hospice care. Most hospices care primarily for adults and are reluctant to take kids.

“The hospice will say, ‘We don’t have the capacity to treat children. Our nurses aren’t trained. It’s different. We just can’t do it,’” said Lori Butterworth, co-founder of the Children’s Hospice and Palliative Care Coalition of California in Watsonville. “The other reason is not wanting to, because it’s existentially devastating and sad and hard.”

Finances also play a role. Home hospice care is paid at a per diem rate set by Medicare — slightly over $200 a day for the first two months, about $161 a day after that — and it is typically the same for kids and adults. Children, particularly those with rare conditions, often require more intensive and innovative care, so the per diem doesn’t stretch as far.

The concurrent care provision has made taking pediatric patients more viable for hospice organizations, Steinhorn and others said. Under the ACA, many of the expenses for certain medications and medical services can be shifted to the patient’s primary insurance, leaving hospices responsible for pain relief and comfort care.

Even so, the relatively small number of kids who die each year from protracted ailments hardly makes pediatric hospice an appealing line of business in an industry craving growth, especially one in which private equity investors are active and seeking a big payday.

In California, only 21 of 1,336 hospices reported having a specialized pediatric hospice program, and 59 said they served at least one patient under age 21, according to an analysis of 2020 state data by Cordt Kassner, CEO of Hospice Analytics in Colorado Springs, Colorado.

Hospice providers that do cater to children often face a more basic challenge: Even with the possibility of concurrent care, many parents still equate hospice with acceptance of death. That was the case initially for Matt and Reese Sonnen, Los Angeles residents whose daughter, Layla, was born with a seizure disorder that had no name: Her brain had simply failed to develop in the womb, and an MRI showed “fluid taking up space where the brain wasn’t,” her mother said.

When Layla’s team first mentioned hospice, “I was in the car on my phone, and I almost crashed the car,” Reese recalled. “The first thought that came to mind was, ‘It is just the end,’ but we felt she was nowhere near it, because she was strong, she was mighty. She was my little girl. She was going to get through this.”

About three months later, as Layla’s nervous system deteriorated, causing her to writhe in pain, her parents agreed to enroll her in hospice with TrinityKids Care. She died weeks later, not long after her 2nd birthday. She was in her mother’s arms, with Matt close by.

“All of a sudden, Layla breathed out a big rush of air. The nurse looked at me and said, ‘That was her last breath.’ I was literally breathing in her last breath,” Reese recounted. “I never wanted to breathe again, because now I felt I had her in my lungs. Don’t make me laugh, don’t make me exhale.”

Layla’s parents have no regrets about their decision to put her in hospice. “It was the absolute right decision, and in hindsight we should have done it sooner,” Matt said. “She was suffering, and we had blinders on.”

A photo shows Adriana Pinedo sitting at home and feeding her son, Aaron, with a bottle.
Adriana Pinedo spends much of her day alone with her son. She has chosen to live in the moment, she says, because otherwise her mind wanders to a future in which either “he could die — or he won’t, and I’ll end up changing the diapers of a 40-year-old man.”

Adriana Pinedo said she is “infinitely grateful” for hospice, despite the heartache of Aaron’s condition. Sometimes the social worker will stop by, she said, just to say hello and drop off a latte, a small gesture that can feel very uplifting. “They’ve been our lifeline,” she said.

Adriana talks about a friend of hers with a healthy baby, also named Aaron, who is pregnant with her second child. “All the stuff that was on our list, they’re living. And I love them dearly,” Adriana said. “But it’s almost hard to look, because it’s like looking at the stuff that you didn’t get. It’s like Christmas Day, staring through the window at the neighbor’s house, and you’re sitting there in the cold.”

Yet she seems palpably torn between that bleak remorse and the unconditional love parents feel toward their children. At one point, Adriana interrupted herself midsentence and turned to her son, who was in Hector’s arms: “Yes, Papi, you are so stinking cute, and you are still my dream come true.”

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!

Doctors receive training to openly discuss death and dying with patients

More doctors are having conversations with patients about end-of-life care.

By Joanne Finnegan

It can be a tough conversation for most doctors: talking to a patient who is dying.

It can make many physicians uncomfortable, which is why they can benefit from training to help teach them how to talk to patients about death and dying.

One of these efforts has been put together by Anna-Gene O’Neal, who runs Alive Hospice in Tennessee, according to STAT. She launched the SHARE simulation lab last year that allows physicians and other clinicians to run though scenarios with actors, who play the part of patients.

For instance, a doctor interacts with a “patient” who has lung cancer and has undergone chemotherapy. When he tells her she doesn’t need more chemotherapy, she wonders if she has beaten the disease, but the doctor must tell her the cancer has metastasized and she has only six months or less to live.

The simulation is recorded and the video given to the doctor as a way to learn how to deal with patient emotions that include confusion, denial, anger and grief. O’Neal watches the tape with the doctors on a big-screen TV and encourages direct and honest communication with patients. Clinicians pay $350 to work through four scenarios and then watch the videos and get feedback. She recommends doctors:  

  • Be aware of  their body language. Look patients in the eye and focus on them. 
  • Communicate like it’s a conversation. Become comfortable with long pauses after breaking difficult news to a patient.
  • Be direct with patients about their prognosis.

Hospitals and hospice programs are setting up training programs across the country. Stanford’s palliative medicine department has used similar techniques to train hospice nurses in California, STAT said. Oncologists at the University of Rochester Medical Center in New York observe other doctors having conversations with patients facing terminal illness. And in Arizona, administrators of Hospice of the West in Phoenix hold regular training sessions at staff meetings.

The Florida Hospital Association has also partnered with the Institute for Healthcare Improvement to provide hospitals and communities with training designed to generate end-of-life care discussions early on, according to Hospitals & Health Networks. Hospital training began in May and community training will get underway as part of the Conversation Project, which aims to help patients die in circumstances and surroundings that they choose.

The statistics show that more doctors are engaging in end-of-life counseling sessions with Medicare patients. In 2016, the first year doctors could charge Medicare for the service, nearly 14,000 providers billed almost $35 million—including nearly $16 million paid by Medicare—or advance care planning conversations for about 223,000 patients from January through June, according to data released from the Centers for Medicare & Medicaid Services.

Complete Article HERE!