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!

Let’s talk about dying

The most unavoidable topic that everyone avoids

By Hannah Mirsky

No one talks about death. I didn’t for a long time.

Sometimes the words spilled out when I was with a friend, but I never felt satisfied. Other times it was late at night and I would mope out to the living room past midnight to sit with my mother and briefly discuss how much we missed those in our family who died.

That was it though. Death would be brought up, but the conversation never was discussed for too long.

In the summer going into seventh grade my grandmother died from pancreatic cancer, then my aunt ten months later from bladder cancer. Then my grandfather a few years later.

As I coped with the death of my family members, I began excessively planning out my future. I developed the ideal life from the city I’ll reside in, to the color I would paint my apartment walls. When I committed to college I vowed I would take every opportunity I could possibly get and fill each day with experiences that could help me with this vision.

But I worked so much when I got to college. It got to the point last fall that I lost a part of myself. There were no moments of peace in my day. I took a full course load, managed my school’s broadcast news department, worked an internship, another part-time job and choreographed for Quinnipiac University’s Tap Company. In every way, I was disconnected from the people around me and myself.

Yet during this particular semester, I was enrolled in a course called “Sociology of Death/Dying” where we discussed social interaction between the dying person, professional caregivers and loved ones. The class flowed like an open forum.

I joked that I would start and end my week with death since I only had that course on Mondays and Fridays. My friends didn’t laugh too much.

Three times a week I was forced to consider death in ways I hadn’t considered. For the first time, I was forced to confront the topic of death on a daily basis.

More than anything, this course revealed the significance of starting conversations about the dying process before death itself. While the person is dying, family and friends are often so wrapped up in trying to keep them around for a bit longer. However, the person dying may feel an obligation to fight for their family when it isn’t something they want. We begin making decisions not for ourselves anymore and we become alienated from the people that we should lean on the most.

Conversations need to begin with health workers and doctors, it needs to trickle down to the family.

Death is isolating in our world— a stigma that many don’t talk about directly. It wasn’t until I met a very close friend of mine when I was in Washington D.C. that I mentioned that I joked about death a lot. No one had ever told me that I brought it up that often.

Maybe, had I allowed myself to discuss how I felt about death when I was growing up, I wouldn’t weave it into my conversations so much now. However, death changes you. I don’t think I would be as articulate with how I spend my days or have had such a clear path. In a way, it helped me understand my priorities and know I don’t have forever to meet them. If I want something, I no longer wait.

It shouldn’t have taken so long for me to feel comfortable talking about death, but it is something many people still struggle with. Neglecting conversation on the certainty of something each one of us will go through ends up forcing us to not consider what we want in life.

Complete Article HERE!

Why don’t more people of color receive end-of-life care?

People from historically underserved communities don’t just rarely utilize medical aid in dying; they also are less likely to utilize hospice and other palliative care options.

Brandi Alexander is the National Director of Community Engagement for Compassion & Choices.

by Brandi Alexander

Since New Jersey’s “Medical Aid in Dying for the Terminally Ill Act” took effect three years ago, not one Black, Hispanic, Native Hawaiian, Pacific Islander, or Native American state resident has used the law to gently end their suffering.

The question is: Why?

According to state Health Department reports, 89 of the 95 New Jerseyans who have used the law were white (94%), four were Asian, and two were of an unspecified single race. This racial disparity is similar to what’s seen in annual reports in eight of the 10 other jurisdictions that authorize medical aid in dying.

As to why white people are more likely to use this option, some suggest it is because white people mostly are the ones who want it. But that is not true.

A recent national survey showed that 62% of Black voters, 70% of Hispanic/Latino voters, and 65% of voters from all other ethnic groups surveyed would want the option of medical aid in dying if they became terminally ill, compared with 67% of white voters.

Reducing New Jersey’s 15-day waiting period, or waiving it when necessary, would improve access to medical aid in dying statewide. Other states such as California, New Mexico, and Oregon have reduced their waiting period; Oregon also waived its residency requirement. New Jersey should also authorize the state’s share of Medicaid to pay for medical aid in dying, as California, Hawai’i, and Oregon do. After all, New Jersey’s Medicaid program covers hospice care; it also should cover the end-of-life care that patients want, including medical aid in dying.

But these revisions alone would not be enough to reduce the racial gap.

Everyone deserves equal access to all types of end-of-life care.

The reality is people from historically underserved communities don’t just rarely utilize medical aid in dying; they also are less likely to utilize hospice and other palliative care options.

As anyone whose loved one has entered hospice can tell you, it is an invaluable resource, which gives peace and comfort to the dying person, as well as to loved ones.

There are likely a variety of reasons why people of color are not getting this care at the end of their lives. They may tend to prefer aggressive treatments, and may not be offered palliative options, due to institutional racism, cultural and language barriers, lack of access, and economic and insurance hurdles. These facts have been documented by researchers, who found that people of color with end-stage kidney disease were less likely to receive referrals for palliative care than white patients. Other reasons may include mistrust of the health-care system, lack of in-home resources, influences of cultural and religious beliefs, lack of knowledge about available services, and misconceptions about hospice and palliative care.

Indeed, the racial disparities in use of hospice and end-of-life care are consistent with a broad range of racial disparities in the use of health care, as well as health outcomes.

Everyone deserves equal access to all types of end-of-life care. So how do we make that happen?

It will take time, cultural and religious sensitivity (e.g., understanding the importance and impact of faith, spirituality, and culture on end-of-life care decisions in communities of color), and trusted voices to empower and inform diverse communities about the quality-of-life benefits of hospice and palliative care.

Heath-care professionals should initiate conversations with all of their patients, no matter their background, about the importance of discussing their end-of-life care options with their doctors and loved ones, documenting their preferences in writing by completing an advance directive, and appointing a health-care proxy to carry them out if they are unable to speak for themselves. This information can be a source of enormous comfort for terminally ill patients and their loved ones.

Just as we fight for everyone to have equal access to what options people want in life, so too should we fight for equal access to options they want when it comes to death.

Complete Article HERE!

How to plan for the death of a loved one

By Joel Theisen

The end of life doesn’t need to be filled with pain, frustration, guilt and clashing family dynamics.

My grandpa was dying of bone cancer, an especially gruesome way to go. He’d shriveled down to 85 pounds. The bathtub was one of the few things that brought him comfort.

So there we sat in his final days as he talked about his life and the things he cared about. He was riddled with pain, yet cracking jokes right and left. We spent hours laughing out loud. It was his way of telling me that he was at peace. And it was one of the most beautiful experiences I’ve had as a human being.

After 30 years as a nurse and chief executive of a senior care company that has served over a million lives in the community and within senior housing, I’ve experienced more than my share of death. I learned that the end of life needn’t be filled with pain and frustration, with guilt and clashing family dynamics. It can be a time to cherish the spark in a loved one’s eye, their spirit and wisdom. And that we can help them die in the most positive way possible.

Your wishes codified

I’ve seen it often through the years. A terminal illness arrives. The dying person’s last wishes aren’t in place. Now tough decisions need to be made in a moment of crisis. Everyone in the family has their own opinion, freighted by our cultural fear of death. I’ve seen it get ugly, with families torn apart. Our loved one doesn’t get the death she wants.

I’ve also seen the opposite, when death is peaceful and lovely. The difference is usually a POLST–portable medical orders — an end of life plan conceived with your doctor that travels with you from hospital to nursing home, or wherever your journey takes you. The idea is to outline your wishes before crisis hits, rather than leaving it to group decisions in times of trauma.

You can take a curative route, signifying your willingness to undergo any treatment as long as there’s a shot. You can take a palliative path, which focuses more on bringing relief and comfort to your final days. Or you can choose a mixture of both, dictating whether you want such things as a feeding tube, a ventilator, or to even be taken to a hospital at all.

The POLST informs family and facilities of exactly what you want. When those final days arrive and family gathers at bedside, there’s no need to speculate on medical choices. Everything that’s important is already in place.

Hospice

Chances are that a loved one with a terminal condition is already eligible for hospice care, offered free to Medicare recipients who’ve been certified by a doctor as having six or less months to live. The program was conceived by the federal government after realizing that people were spending most of their money during the last two years of life. Their savings were being drained by extraordinary measures that didn’t really help, rather than concentrating on the supportive care they truly needed.

Instead of sending you to a hospital, hospice comes to you, be it your home of 40 years, or your apartment in an assisted living facility, or even a relative’s house. It’s all about comfort. You’ll be cared for by experts in death and dying whose mission is to provide the least restrictive experience possible.

Nurses, aides, and physicians work within your plan. They can bring you a hospital bed to help you sleep or equipment to help you breathe. There’s spiritual care, music therapy, visiting aides, volunteers, and bereavement coverage for family. There’s also a pain management plan, with the goal of making the end of life as serene as possible.

The most peaceful deaths I’ve seen are when people die in their own homes on their own terms. The Medicare hospice program helps make that happen, especially when it’s used sooner than the final days of life.

This doesn’t mean you can’t turn back. We’re humans. We get scared. You can leave hospice whenever you want for one last shot with chemo and radiation. The larger point is that you and your family are educated early, preparing emotionally, mentally, and spiritually. And that someone will be with you the entire journey, holding mom’s hand — or your hand if that’s what you need — to help you make the most of those final days.

I know about trauma. My sister died in a car crash at age 43, leaving behind two kids. It was a horrific experience, but we’ve chosen to make the most of it.

Every year we take a family vacation. And every year we set aside time to celebrate my sister. We talk about our feelings and frustrations, our love and loss. It’s not always a glorious celebration. But it’s helpful.

Circumstances didn’t allow us to prepare for her death. So we’re trying to make the most of it in retrospect.

Like it or not, no one on this planet is getting out alive. Though our finish line may be the same, the ways we get there — and the methods we choose to deal with the aftermath — are often up to us. A solid plan for the final stages will help both us and our survivors. Start talking now with your loved ones. The more we do, the less we fear the inevitable. What you discover may provide the means for not just an end, but a magnificent one.

Complete Article HERE!