— Researchers are documenting a phenomenon that seems to help dying people, as well as those they leave behind.
By Phoebe Zerwick
Chris Kerr was 12 when he first observed a deathbed vision. His memory of that summer in 1974 is blurred, but not the sense of mystery he felt at the bedside of his dying father. Throughout Kerr’s childhood in Toronto, his father, a surgeon, was too busy to spend much time with his son, except for an annual fishing trip they took, just the two of them, to the Canadian wilderness. Gaunt and weakened by cancer at 42, his father reached for the buttons on Kerr’s shirt, fiddled with them and said something about getting ready to catch the plane to their cabin in the woods. “I knew intuitively, I knew wherever he was, must be a good place because we were going fishing,” Kerr told me.
As he moved to touch his father, Kerr felt a hand on his shoulder. A priest had followed him into the hospital room and was now leading him away, telling him his father was delusional. Kerr’s father died early the next morning. Kerr now calls what he witnessed an end-of-life vision. His father wasn’t delusional, he believes. His mind was taking him to a time and place where he and his son could be together, in the wilds of northern Canada. And the priest, he feels, made a mistake, one that many other caregivers make, of dismissing the moment as a break with reality, as something from which the boy required protection.
It would be more than 40 years before Kerr felt compelled to speak about that evening in the hospital room. He had followed his father, and three generations before him, into medicine and was working at Hospice & Palliative Care Buffalo, where he was the chief medical officer and conducted research on end-of-life visions. It wasn’t until he gave a TEDx Talk in 2015 that he shared the story of his father’s death. Pacing the stage in the sport coat he always wears, he told the audience: “My point here is, I didn’t choose this topic of dying. I feel it has chosen or followed me.” He went on: “When I was present at the bedside of a dying person, I was confronted by what I had seen and tried so hard to forget from my childhood. I saw dying patients reaching and calling out to mothers, and to fathers, and to children, many of whom hadn’t been seen for many years. But what was remarkable was so many of them looked at peace.”
The talk received millions of views and thousands of comments, many from nurses grateful that someone in the medical field validated what they have long understood. Others, too, posted personal stories of having witnessed loved ones’ visions in their final days. For them, Kerr’s message was a kind of confirmation of something they instinctively knew — that deathbed visions are real, can provide comfort, even heal past trauma. That they can, in some cases, feel transcendent. That our minds are capable of conjuring images that help us, at the end, make sense of our lives.
Nothing in Kerr’s medical training prepared him for his first shift at Hospice Buffalo one Saturday morning in the spring of 1999. He had earned a degree from the Medical College of Ohio while working on a Ph.D. in neurobiology. After a residency in internal medicine, Kerr started a fellowship in cardiology in Buffalo. To earn extra money to support his wife and two young daughters, he took a part-time job with Hospice Buffalo. Until then, Kerr had worked in the conventional medical system, focused on patients who were often tethered to machines or heavily medicated. If they recounted visions, he had no time to listen. But in the quiet of Hospice, Kerr found himself in the presence of something he hadn’t seen since his father’s death: patients who spoke of people and places visible only to them. “So just like with my father, there’s just this feeling of reverence, of something that wasn’t understood but certainly felt,” he says.
During one of his shifts, Kerr was checking on a 70-year-old woman named Mary, whose grown children had gathered in her room, drinking wine to lighten the mood. Without warning, Kerr remembers, Mary sat up in her bed and crossed her arms at her chest. “Danny,” she cooed, kissing and cuddling a baby only she could see. At first, her children were confused. There was no Danny in the family, no baby in their mother’s arms. But they could sense that whatever their mother was experiencing brought her a sense of calm. Kerr later learned that long before her four children were born, Mary lost a baby in childbirth. She never spoke of it with her children, but now she was, through a vision, seemingly addressing that loss.
In observing Mary’s final days at Hospice, Kerr found his calling. “I was disillusioned by the assembly-line nature of medicine,” Kerr told me. “This felt like a more humane and dignified model of care.” He quit cardiology to work full time at the bedsides of dying patients. Many of them described visions that drew from their lives and seemed to hold meaning, unlike hallucinations resulting from medication, or delusional, incoherent thinking, which can also occur at the end of life. But Kerr couldn’t persuade other doctors, even young residents making the rounds with him at Hospice, of their value. They wanted scientific proof.
At the time, only a handful of published medical studies had documented deathbed visions, and they largely relied on secondhand reports from doctors and other caregivers rather than accounts from patients themselves. On a flight home from a conference, Kerr outlined a study of his own, and in 2010, a research fellow, Anne Banas, signed on to conduct it with him. Like Kerr, Banas had a family member who, before his death, experienced visions — a grandfather who imagined himself in a train station with his brothers.
The study wasn’t designed to answer how these visions differ neurologically from hallucinations or delusions. Rather, Kerr saw his role as chronicler of his patients’ experiences. Borrowing from social-science research methods, Kerr, Banas and their colleagues based their study on daily interviews with patients in the 22-bed inpatient unit at the Hospice campus in the hope of capturing the frequency and varied subject matter of their visions. Patients were screened to ensure that they were lucid and not in a confused or delirious state. The research, published in 2014 in The Journal of Palliative Medicine, found that visions are far more common and frequent than other researchers had found, with an astonishing 88 percent of patients reporting at least one vision. (Later studies in Japan, India, Sweden and Australia confirm that visions are common. The percentages range from about 20 to 80 percent, though a majority of these studies rely on interviews with caregivers and not patients.)
In the last 10 years, Kerr has hired a permanent research team who expanded the studies to include interviews with patients receiving hospice care at home and with their families, deepening the researchers’ understanding of the variety and profundity of these visions. They can occur while patients are asleep or fully conscious. Dead family members figure most prominently, and by contrast, visions involving religious themes are exceedingly rare. Patients often relive seminal moments from their lives, including joyful experiences of falling in love and painful ones of rejection. Some dream of the unresolved tasks of daily life, like paying bills or raising children. Visions also entail past or imagined journeys — whether long car trips or short walks to school. Regardless of the subject matter, the visions, patients say, feel real and entirely unique compared with anything else they’ve ever experienced. They can begin days, even weeks, before death. Most significant, as people near the end of their lives, the frequency of visions increases, further centering on deceased people or pets. It is these final visions that provide patients, and their loved ones, with profound meaning and solace.
Kerr’s latest research is focused on the emotional transformation he has often observed in patients who experience such visions. The first in this series of studies, published in 2019, measured psychological and spiritual growth among two groups of hospice patients: those who had visions and a control group of those who did not. Patients rated their agreement with statements including, “I changed my priorities about what is important in life,” or “I have a better understanding of spiritual matters.” Those who experienced end-of-life visions agreed more strongly with those statements, suggesting that the visions sparked inner change even at the end of life. “It’s the most remarkable of our studies,” Kerr told me. “It highlights the paradox of dying, that while there is physical deterioration, they are growing and finding meaning. It highlights what patients are telling us, that they are being put back together.”
Kerr has been nagged ever since by the inadequacy of science, and of language, to fully capture the mysteries of the mind. “We were so caught up in trying to quantify and give structure to something so deeply spiritual, and really, we were just bystanders, witnesses to this,” he says. “It feels a little small to be filling in forms when you’re looking at a 90-something-year-old veteran who is back in time 70 years having an experience you can’t even understand.” When Kerr talks about his research at conferences, nurses tend to nod their heads in approval; doctors roll their eyes in disbelief. He finds that skeptics often understand the research best when they watch taped interviews with patients.
What’s striking about this footage, which dates back to Kerr’s early work in 2008, is not so much the content of the visions but rather the patients’ demeanor. “There’s an absence of fear,” Kerr says. A teenage girl’s face lights up as she describes a dream in which she and her deceased aunt were in a castle playing with Barbie dolls. A man dying of cancer talks about his wife, who died several years earlier and who comes to him in his dreams, always in blue. She waves. She smiles. That’s it. But in the moment, he seems to be transported to another time or place.
Kerr has often observed that in the very end, dying people lose interest in the activities that preoccupied them in life and turn toward those they love. As to why, Kerr can only speculate. In his 2020 book, “Death Is but a Dream,” he concludes that the love his patients find in dying often brings them to a place that some call enlightenment and others call God. “Time seems to vanish,” he told me. “The people who loved you well, secured you and contributed to who you are are still accessible at a spiritual and psychological level.”
That was the case with Connor O’Neil, who died at the age of 10 in 2022 and whose parents Kerr and I visited in their home. They told us that just two days before his death, their son called out the name of a family friend who, without the boy’s knowledge, had just died. “Do you know where you are?” Connor’s mother asked. “Heaven,” the boy replied. Connor had barely spoken in days or moved without help, but in that moment, he sat up under his own strength and threw his arms around her neck. “Mommy, I love you,” he said.
Kerr’s research finds that such moments, which transcend the often-painful physical decline in the last days of life, help parents like the O’Neils and other relatives grieve even unfathomable loss. “I don’t know where I would be without that closure, or that gift that was given to us,” Connor’s father told us. “It’s hard enough with it.” As Kerr explains, “It’s the difference between being wounded and soothed.”
In June, I visited the adult daughter of a patient who died at home just days earlier. We sat in her mother’s living room, looking out on the patio and bird feeders that had given the mother so much joy. Three days before her mother’s death, the daughter was straightening up the room when her mother began to speak more lucidly than she had in days. The daughter crawled into her mother’s bed, held her hand and listened. Her mother first spoke to the daughter’s father, whom she could see in the far corner of the room, handsome as ever. She then started speaking with her second husband, visible only to her, yet real enough for the daughter to ask whether he was smoking his pipe. “Can’t you smell it?” her mother replied. Even in the retelling, the moment felt sacred. “I will never, ever forget it,” the daughter told me. “It was so beautiful.”
I also met one of Banas’s patients, Peggy Haloski, who had enrolled in hospice for home care services just days earlier, after doctors at the cancer hospital in Buffalo found blood clots throughout her body, a sign that the yearlong treatment had stopped working. It was time for her husband, Stephen, to keep her comfortable at home, with their two greyhounds.
Stephen led Banas and me to the family room, where Peggy lay on the couch. Banas knelt on the floor, checked her patient’s catheter, reduced her prescriptions so there were fewer pills for her to swallow every day and ordered a numbing cream for pain in her tailbone. She also asked about her visions.
The nurse on call that weekend witnessed Peggy speaking with her dead mother.
“She was standing over here,” Peggy told Banas, gesturing toward the corner of the room.
“Was that the only time you saw her?” Banas asked.
“So far.”
“Do you think you’ll be seeing her more?”
“I will. I will, considering what’s going on.”
Peggy sank deeper into the couch and closed her eyes, recounting another visit from the dead, this time by the first greyhound she and Stephen adopted. “I’m at peace with everybody. I’m happy,” she said. “It’s not time yet. I know it’s not time, but it’s coming.”
When my mother, Chloe Zerwick, was dying in 2018, I had never heard of end-of-life visions. I was acting on intuition when her caregivers started telling me about what we were then calling hallucinations. Mom was 95 and living in her Hudson Valley home under hospice care, with lung disease and congestive heart failure, barely able to leave her bed. The hospice doctor prescribed an opioid for pain and put her on antipsychotic and anti-anxiety medicines to tame the so-called hallucinations he worried were preventing her from sleeping. It is possible that some of these medications caused Mom’s visions, but as Kerr has explained, drug-induced hallucinations do not rule out naturally occurring visions. They can coexist.
In my mother’s case, I inherently understood that her imaginary life was something to honor. I knew what medicine-induced hallucinations looked and felt like. About 10 years before her death, Mom fell and injured her spine. Doctors in the local hospital put her on an opioid to control the pain, which left her acting like a different person. There were spiders crawling on the hospital wall, she said. She mistook her roommate’s bed for a train platform. Worse, she denied that I loved her or ever did. Once we took her off the medicine, the hallucinations vanished.
The visions she was having at the end of her life were entirely different; they were connected to the long life she had led and brought a deep sense of comfort and delight. “You know, for the first time in my life I have no worries,” she told me. I remember feeling a weight lift. After more than a decade of failing health, she seemed to have found a sense of peace.
The day before her death, as her breathing became more labored, Mom made an announcement: “I have a new leader,” she said.
“Who is that?” I asked.
“Mark. He’s going to take me to the other side.”
She was speaking of my husband, alive and well back home in North Carolina.
“That’s great, Mom, except that I need him here with me,” I replied. “Do you think he can do both?”
“Oh, yes. He’s very capable.”
That evening, Mom was struggling again to breathe. “I’m thinking of the next world,” she said, and of my husband, who would lead her there. The caregiver on duty for the night and I sat at her bedside as Mom’s oxygen level fell from 68 to 63 to 52 and kept dropping until she died the next morning. My mother was not a brave person in the traditional sense of the word. She was afraid of snakes, the subway platform and any hint of pain. But she faced her death, confident that a man who loves her daughter would guide her to whatever lay ahead.
“Do you think it will happen to you?” she asked me at one point about her dreaming life.
“Maybe it’s genetic,” I replied, not knowing, as I do now, that these experiences are part of what may await us all.
Complete Article ↪HERE↩!
Is extending life by weeks worth the toll some cancer drugs take?
— Doctors push for ‘common-sense oncology’
People may celebrate a 2-week improvement in survival without acknowledging costs
By Amina Zafar, Christine Birak
Tom Somerville’s decision to stop medical treatment for his end-stage cancer was a personal one.
Somerville, 62, was diagnosed with colon cancer in 2021 that later spread to his liver. He had six months of chemotherapy to slow down the cancer, which he said also left him exhausted with nausea.
The Kingston, Ont., resident decided to take a break from treatment to enjoy a trip with his wife to Victoria.
“Things that you cherish change, right?” Somerville said. “I used to love being out in the bush, but now it is just nice to have a sunny day, sit with my family [and] have visitors.”
Somerville said he came to terms with his prognosis and decided to enjoy the rest of the life he has left, extending the chemo break to a full stop. He said he was relieved to not “feel crappy” from the treatment anymore.
Dr. Christopher Booth, Somerville’s medical oncologist at Kingston General Hospital, supports him in his decision.
Booth is also part of a group of cancer doctors in Canada and the U.S. who say medications with marginal benefits are overused for patients in the end stage of the disease. The oncologists have started a campaign through their website, journal articles and podcasts encouraging honest conversations about use of the drugs with cancer patients, their families and experts.
The goal of what they call “common-sense oncology” is to prioritize treatments that meaningfully improve survival and quality of life. They aim to address what they see as problems in the field, such as a lack of critical thinking in oncology training, falling standards for drug approvals and avoidance of end-of-life discussions.
Balancing hope and reality
Booth said while there have been incredible advances in cancer treatments in his 20 years of practice, there’s also an unfortunate reality: cancer can’t always be cured. He strives to convey it in a compassionate and clear way.
“Balancing … providing information but also providing hope, that’s the art of cancer care,” Booth said. “Balancing hope and reality, balancing treatment and quality of life and side-effects, that’s the tough part of this job.”
Booth said he thinks everyone would agree that a treatment that helps a patient live for extra months or years is very helpful. But when a treatment buys weeks with a lot of side-effects, then patient perspectives may differ.
In part that’s because the cancer drugs that can shrink tumours alsocome with side-effects, including fatigue, vomiting and hair loss.
Dr. Bishal Gyawali, a medical oncologist and associate professor at Queen’s University in Kingston, was motivated to press for changes when he noticed increased spending on treatments that don’t make much difference in patients’ lives while at the same time agencies didn’t put resources to what’s already been proven to work.
Gyawali previously treated people with cancer in Nepal, Japan, and the U.S. and saw the same trends there.
When attending oncology conferences, Gyawali said presenters would celebrate a two-week improvement in survival from a new treatment. Then, behind closed doors, other delegates would talk about the risks and costs of the drug.
“People are saying is this really meaningful?”
Gyawali aims to normalize asking such questions.
Quality of life and quantity
Rachel Koven’s husband, Ken Koven, was diagnosed in his late 40s with adenocarcinoma, which starts in gland cells of the esophagus tube. His cancer was found where the esophagus meets the stomach.
The father and avid runner treated having cancer like a battle, his wife said. He had nine months of palliative chemotherapy that’s given to relieve the symptoms of cancer and improve quality of life, but not meant to cure the malignancy.
The cancer spread. He then underwent radiation to the brain in Kingston, Ont. In 2016, about 16 months after the diagnosis, he died at age 49.
“For my husband, his hope was anchored in treatment,” Koven said. “However well-rounded the discussions we had, he would have always chosen treatment, and I can’t begrudge him for that because that is where he believed his strength was.”
Now, Koven feels families should ask more questions of doctors, such as:
- How much time does this treatment offer?
- What are the real costs and benefits of the treatment?
Koven said not having treatment is sometimes seen as throwing in the towel, but that can be misleading.
“Not having treatment isn’t giving up,” Koven said. “Sometimes by having treatment you are giving up. You are giving up time with your family. You are giving up a quality of life necessarily for something you are not trading off any extra days.”
Koven wrote an essay in 2018 on her experience as her husband’s caregiver in the Canadian Medical Association Journal. At the time, she was motivated “to contribute to the best possible life in the face of death.”
Now Koven advocates for the oncology field to “recalibrate” toward an emphasis on what brings the person joy rather than only focusing on treating their cancer. Finding novel treatments that will really benefit patients is also important to her.
Seek meaningful answers
Dr. Elizabeth Eisenhauer ran more than 170 cancer drug trials in Canada, the U.S. and Europe. Now retired, Eisenhauer won the 2021 Canada Gairdner Wightman Award for investigating new cancer drugs and delivery approaches, including for Taxol, an anti-cancer treatment.
“It’s a good thing we are having so much interest in finding novel therapeutics for cancer,” Eisenhauer said. “But my goodness, let’s find the answers that matter to patients, too.”
Eisenhauer recalled how in the 1980s, scientists set an arbitrary number as a standard, worldwide indicator of safe tumour shrinkage for early clinical trial research.
After that, measuring whether a tumour grew by 20 per cent on a CT scan, the definition of progression, became an endpoint, or goal, for pharmaceutical companies running randomized trials, Eisenhauer said. Randomized trials are meant to guide whether a drug should be used as a standard of care by physicians.
“You have an answer sooner [using tumour shrinkage], but is it an answer that is meaningful?” she said.
Eisenhauer would like to see cancer clinical trials include more criteria.
“I think common-sense oncology from my perspective as a trialist needs to come from the perspective of trying to be sure that the trials that we design at least can capture the information that will be of importance to those discussions with the patient sitting in front of you.”
Eisenhauer said there aren’t a huge number of game changers in oncology every year, but many are available in Canada. She said costs to patients in terms of side-effects and time coming to the clinic also need to be considered.
Despite that, other Canadian researchers looking last year at use of treatments like chemotherapy or major surgery among more than 151,000 people who died found that a treatment was commonly given — in 41 per cent of cases — in the last 30 days of life but was potentially inappropriate.
So far, Gyawali said the common-sense oncology movement is gaining momentum worldwide and he’s received positive feedback from regulators, physicians, patients and payers.
Tom and Katherine Somerville now take time every day to enjoy moments together, like walking down to the pond near their farmhouse, going for a drive on a sunny day or listening to old tunes.
For them, quality of life includes loving glances.
“You appreciate that moment and you want to take it all in and those are the simple things that really are not so simple,” Katherine said. “They’re the important things.”
How to Make End-of-Life Planning Less Stressful
— One tip: Do it over chocolate cake.
By Jancee Dunn
I recently hosted a strange family gathering: an end-of-life lunch.
It was my sister Dinah’s idea. She had been saying for months that it was time to discuss my parents’ final wishes while they were both still able to weigh in.
But I kept putting off the conversation. Who wants to think about it, whether it’s your own or the death of someone you care about?
Research shows that fewer than one third of U.S. residents have advanced-care directives, or detailed medical instructions in the event they can’t communicate their own wishes. Without such instructions, loved ones are left to use guesswork, which can be confusing and chaotic.
So I pushed past my reluctance and invited the family over to talk about everything from their positions on resuscitation and funeral plans to who will take their cats. I even tried to make things festive by ordering pizza and baking a chocolate cake.
I learned things about my family that I never knew: My mom and dad don’t want a memorial service. (“We don’t like big gatherings, whether we’re alive or dead,” my mom explained.) My sister Heather, meanwhile, wants hers to be held at Starbucks. (A Starbucks rep said that while this was “definitely a unique inquiry that we don’t get across our desks often,” they declined to comment further.)
Our lunch was occasionally weird — my dad once read that your “cremains” can be pressed into a working vinyl record, and he briefly floated the idea — but the gathering wasn’t as sad or awkward as I imagined it would be. Instead, it was a relief to chat openly about my folks’ end-of-life wishes instead of repeatedly stashing them away.
If you’ve been putting off these discussions, here’s how to get started.
Schedule a conversation.
First, ask your relatives if they’d be open to a family meeting — in person or on Zoom — and then set a date.
If you need a conversational starter, Mirnova Ceide, an associate professor of geriatric psychiatry and geriatrics at Albert Einstein College of Medicine, suggested bringing up a news story about dementia. “You can say, ‘This got me thinking about how important it is for us to talk about these issues now,’” she said.
If you are the older relative, consider initiating the family meeting yourself, Alua Arthur, an end-of-life doula and the author of the upcoming book “Briefly Perfectly Human,” suggested.
It might feel uncomfortable to broach the subject, she explained, but you can think of getting your affairs in order as a posthumous gift to your family.
You are sparing them a scenario “where they are in the midst of tremendous grief, and then they’re also trying to figure out what to do with all your stuff and where to find your passwords and everything else,” Arthur said.
Prepare a checklist.
Create a document that the whole family can access, and assemble a checklist of topics and prompts to go over, Dr. Ceide said. A good source for questions, she said, is the end-of-life guidelines from the National Institute on Aging.
The two vital things to discuss in the initial meeting, Dr. Ceide said, are who will serve as a health care proxy, acting as your stand-in for health care decisions, and what directives should be in your living will.
“We cannot exert control over the timing and nature of our death,” Diane Meier, a professor of geriatrics and palliative medicine at the Icahn School of Medicine at Mount Sinai, added. “You cannot anticipate exactly what the circumstances will be. So the most important thing to do is to identify someone you trust to speak for you if you are unable to speak for yourself when decisions need to be made.”
The institute also has a list of ways to create advance directives for little or no cost. (And Medicare covers advance care planning as part of your yearly wellness visit.)
Once you decide on your health care proxy and draft a living will, you can make it official by completing a durable power of attorney for health care, a legal document that names your health care proxy. Then distribute copies to your doctor, loved ones and, if you have one, a lawyer. (A lawyer is helpful but not required, according to the institute.)
Get reflective.
Our family had a long talk about how my parents wanted to spend their remaining years. Arthur, the doula, suggested asking: What is still undone in your life? “Because that helps you figure out where you want to place your time and energy,” she said.
We went over the things our parents still wanted to do, and how we could make them happen. My parents said they hoped to travel locally a bit more. My dad wants to attend his 65th high school reunion in Michigan (“at my age, they do it every five years”). Dinah, my sister, said she would accompany him.
Another helpful resource is the Stanford Letter Project, a free website that offers tools and templates for writing a “last letter,” a personal message of gratitude, forgiveness or regret to share with the people you love.
Consider regular check-ins.
End-of-life care is likely too big a topic to resolve in one meeting, Dr. Ceide said. She encourages families to have a regular conference call to check in.
Doing this can help you get on the same page so you’re all aware of, and planning for, issues like getting a ramp for your parents’ house, Dr. Ceide explained. You’re able to address “little things as they come so that when the bigger issues happen, you already have an infrastructure and a comfort with communicating together about these things.”
After our meeting, my father asked me to pack up a piece of chocolate cake to take home. “After all this death talk, I should probably seize the day,” he said.
Complete Article ↪HERE↩!
Irish committee to recommend laws for assisted dying
— Proposed legislation would allow people help with ending their lives under certain medical conditions
An all-party parliamentary committee in Ireland is to recommend that legislation be introduced to allow for assisted dying if a person has a terminal illness or has only a short time to live.
A majority on the Oireachtas committee on assisted dying supported the proposal that the law be changed to allow someone to get assistance to end their life if they have between six and 12 months to live.
The legislation would apply to people who have been diagnosed with an illness or a medical condition that is “incurable, irreversible, progressive” and at an advanced stage that will cause death within six months.
It is expected that the time limit for those with a neurodegenerative condition would be extended to 12 months.
The committee’s report is to be published on 20 March but has now been agreed by a majority of representatives from all sides of the Irish parliament. After its publication it will go to government for further consideration.
It is unclear whether the three-party coalition government led by Leo Varadkar is prepared to introduce legislation to enact the recommendation before a general election expected this autumn.
If it does, Ireland will join other countries including Switzerland, Belgium, Canada and the Netherlands in allowing assisted dying under certain circumstances.
It is understood that the proposed Irish legislation would require two doctors to sign off on a person’s incurable and life-threatening condition.
At hearings representatives of the Christian churches and a Muslim cleric voiced their opposition to the legislation, saying it was morally wrong to kill someone and was against God’s will.
Some psychiatrists also argued it could lead to “a slippery slope” with increasing numbers seeking to end their lives.
But the committee’s recommendation has been welcomed by the chair of the advocacy group End of Life Ireland.
Janie Lazar said: “We’ve been working hard to get people talking about assisted dying and about the choices that should be available to those who have no time to wait or waste.”
Constitutional law experts say they are confident that the committee’s recommendation would not require a referendum but a simple law change.
Nathan Stilwell, assisted dying campaigner for Humanists UK, welcomed the “bold move”, comparing it favourably with the debate in Britain where a report by MPs last month did not recommend a vote on the issue.
“Well done to the Irish special Oireachtas committee on assisted dying for taking an evidence-based and compassionate approach. It’s brilliant to see such a bold move after just a week ago a Westminster committee did not vote for any change in the law,” said Stilwell.
Complete Article ↪HERE↩!
Death doulas
— Helping people at the end of their life
You may have heard of a birth doula – someone who provides non-medical support and advocacy throughout pregnancy, birth and after the baby has been born. More recently, so-called death doulas – people who assist at the other end of the lifespan – have been growing in popularity.
The role of death doulas is still relatively new, so the terminology and definitions of what they are based on what they do are in flux. They are sometimes referred to as an end-of-life doula, soul midwife, death coach, dying guide, death midwife and palliative care doula. The actual term used is often down to the preference of the practitioner and how they define their work, as well as cultural norms within the country they work in.
Death doulas are known to work in Brazil, Canada, the Czech Republic, Germany, Ireland, Italy, Japan, New Zealand, Russia, the UK and the US. They tend to provide support to people with life-limiting or terminal illnesses, focusing on improving both the quality of life and the quality of death someone experiences. This can include helping with funeral plans, talking about the processes involved around death, or helping someone with their care appointments.
Sometimes, the doula’s contribution is simply about being next to the person and providing company.
The work of a death doula can extend beyond the dying person. They can provide emotional and social support to family, friends and even neighbours – typically the informal carers and social network surrounding the dying person.
Doulas help those close to the dying person with the impending loss (so-called anticipatory grief). Some also carry out errands and chores to enable them to spend time with the dying person. They may also continue to visit those people after the death to support them as they grieve. Crucially, death doulas can enhance the links between professionals and the social support around a person by helping with communications and advocacy work.
Filling the gap
With healthcare systems and informal carers typically stretched beyond capacity, death doulas can provide a means to fill the gap and provide personalised attention. Someone can access doula support either privately or, depending on the doula, through voluntary means.
My colleagues and I recently examined how end-of-life doulas can be provided by the NHS. It noted that the flexibility of the services doulas can provide was not only helpful for the dying person but also for the wider healthcare system. It helped people who may otherwise not receive support due to service gaps, strict referral criteria, or lack of social support.
Beyond supporting individuals, some death doulas see community engagement as core to their role. They are keen to share information about the dying process and grief with others. They may host workshops or death cafes. Across this work, their contributions are to normalise talking about death, dying and loss in society.
Anyone can become a death doula, and it is not currently a regulated profession. There is a wide range of doula training available internationally, including online, provided either by individual doulas or by organisations such as Living Well Dying Well.
Personal experience
In addition to their doula training, doulas bring their own professional and personal experience to the role. International research on death doulas has noted that many who have become death doulas have a background in professional healthcare, social care or education, and may already have some experience with death.
Those who have trained to be a death doula can be eligible to join a community of practice. Within the UK, End of Life Doula UK is a membership organisation for doulas, setting standards for doula practice and representing doulas. Similar organisations exist globally, including the International End of Life Doula Association.
Death doulas are not a replacement for specialist palliative care and cannot prescribe drugs. Their role is to support people in having a good death.
The growing demand for death doulas is one example of how society is questioning what a good death can be and how to make it happen. Other examples include discussions about assisted dying and improving death literacy. Rather than consider death a societal taboo, there is a growing recognition that people want to value the end of life and reshape how it is experienced.
Death doulas can play a pivotal role in supporting a dying person and those around them. Their support can be emotional and practical, often bridging the gaps in existing support or helping to signpost to relevant services. Not everyone may want a doula, but those who do may see it as someone who can guide them through a significant life process.
Complete Article ↪HERE↩!
“I’m not afraid of dying…
But I’m not ready to give in yet”
Lisa Brassington spoke with us in October as she was receiving support from Marie Curie Hospice, Bradford. Here she talks about how the kindness of Marie Curie staff made all the difference to her wellbeing.
By Lisa Brassington
I was diagnosed with a brain tumour in 2011. I’ve had years of radiotherapy and chemotherapy, but I’m on the very last chemo now. After that, there are no more treatment options. The tumour has started to spread to my temporal lobe, so it’s affecting different areas of my body and I’m paralysed down one side. I now need a lot of support.
I used to go to the gym three times a week and I loved food and cooking. I love reading and history. I fostered and rescued Bassett hounds. I had a Bassett hound called Ralph who I walked daily, but I had to give him up. A fantastic rescue charity found him a beautiful home and they keep me updated on his progress. I’ll never be able to have another dog. That breaks my heart.
Before coming to Marie Curie Hospice, Bradford, I’d been stuck in my bedroom at home for over eight months. My husband and I had been looking for care that whole time and couldn’t find anywhere that could support my needs. I felt so unsafe and frightened. Eventually, we found the hospice, and now I feel so safe, cared for, and even loved.
Nothing better than a hug
The Marie Curie Hospice in Bradford is fantastic and it had such an impact on my outlook. It’s not just the unbelievable care they give, it’s their kindness as well. I’ve never experienced kindness like it here, and I’ll never forget that. The staff are always smiling, and I get hugs and lots of care and attention. There’s nothing more important to me than a hug.
Before I arrived, I hadn’t eaten for a long time, so I had no energy, but the food here is delicious and the nurses encourage me to eat. Now everybody is saying I’ve got colour in my cheeks – it’s amazing.
The nurses offered to take my bed outside
There’s a lovely bath here that I can use, and I have a beautiful view of the garden outside of my room, I can watch the squirrels and birds feeding on the bird table. The nurses even offered to take my hospice bed outside if I wanted them to. Because of my condition, I wake up and I don’t know what day it is. I’ve been FaceTiming friends and family thinking it was the evening, but it’s actually been the morning. The nurses write down on a board what day it is and who is supporting me, which is so simple but so helpful for me.
When I first arrived, I told the staff that I love dark, West Indian rum. They told me I can have some here, and so I have my little rum nightcap, which is lovely. Nothing is off limits.
— Lisa
The healthcare assistants and nurses always find time to come and charge my electrical devices, which keep me in touch with family and friends. They’re constantly busy helping people, I can hear their buzzers going off all the time calling them into different rooms, but they still find time to come and charge my things for me and spend some time with me.
A sense of achievement
The hospice has got a fantastic physiotherapist team who have helped me to use the gym. I’ve even taken four steps, which is amazing. It’s not just the sense of achievement for me, it’s the feedback the team gives. I constantly get praised and encouraged. I never realised how important encouragement was until I came here. They have given me some exercises, and I do what I can to try to get my body working.
We’re all dying… I’m one of them
I’ve had a fantastic life, I’ve done everything I’ve wanted to do, I’ve been everywhere I wanted to go. I’m now doing my bucket list. I’ve jumped out of aeroplanes, I’ve gone down to the Spinnaker Tower, I just love doing something different. I’d love to go on a zip-wire, in fact I had a joke with the team here about the hoist in my room!
It was frightening when I first heard the word “hospice” because I just thought of dying people. There’s nothing wrong with dying people, we’re all dying, but it scared me to realise that I’m actually one of them. Now, I’m not afraid of dying. In fact, sometimes, I think it’s going to be a release. But, I’ve always been a fighter and I’m not ready to give in yet.
Complete Article ↪HERE↩!
Planning for end-of-life expenses amid soaring costs
In the realm of financial planning, agents and advisors diligently guide their clients through the complexities of retirement savings, investments, and insurance. Yet, there’s a critical aspect that often doesn’t receive the attention it warrants until it’s too late: the cost of dying. Recent data reveals a stark reality: The price tag attached to end-of-life care and funeral expenses is climbing, propelled by inflation and escalating health care costs. Let’s look at the implications of these rising costs and outline strategies financial professionals can employ to assist their clients in preparing for the future.
The unavoidable cost of dying
The Consumer Price Index indicates a notable 4.8% increase in funeral costs over the past year, signifying the upward trajectory of end-of-life expenses. An average American now faces more than $24,000 in medical and funeral costs at life’s end. Specifically, end-of-life medical expenses average more than $16,000, while the median funeral cost nears $8,000. These figures highlight an uncomfortable truth: even in death, one cannot escape the financial implications of inflation.
Deepening funeral costs
The average funeral in the U.S. costs between $7,000 and $12,000, encompassing expenses from caskets and embalming to transportation, plots, flowers, services, headstones and funeral home fees. Opting for more elaborate services or higher-end options can significantly inflate these costs. This financial burden is not one most individuals wish to impose on their relatives posthumously.
The true ‘killer:’ Medical care costs
Although funeral expenses are steep, the cost of medical care in the final stages of life is even more daunting. Medicare provides some relief but hospital, palliative care and hospice care costs continue to surge. Hospital stays can exceed $10,000 per day before insurance. Despite a preference for dying at home, only about 25% of individuals do so, with the majority ending their lives in some form of medical care facility.
Planning for estate and legal considerations
Beyond medical and funeral costs, there are estate and legal fees to consider. The process of settling an estate and distributing inheritances involves a complex web of legalities, adding another layer of expense that can easily propel total end-of-life costs beyond $50,000.\
Strategic planning for end-of-life expenses
- Savings and investments. One approach is for clients to allocate a portion of their savings or investments specifically for end-of-life expenses. This proactive measure can mitigate the financial impact on loved ones.
-
- Insurance solutions. Life insurance or specialized end-of-life insurance products can offer a safety net for funeral and other final expenses. However, seniors may face high premiums, and those with existing life insurance policies may be overinsured if they plan to use these funds solely for funeral costs.
- Life insurance settlements. For seniors facing steep life insurance premiums or those with more insurance coverage than necessary, a life insurance settlement presents a viable option. Selling their policy in the secondary market can provide them with a lump sum to cover end-of-life expenses, freeing them from the burden of escalating premiums.
The role of agents and advisors
Financial professionals play a pivotal role in navigating these complex waters. By conducting policy appraisals, advisors can determine whether a life insurance settlement is appropriate, potentially reallocating those funds toward long-term care insurance or directly covering end-of-life expenses. This strategic planning can alleviate the financial strain on clients and their families, ensuring a more manageable and dignified end-of-life experience.
As the costs associated with end-of-life care continue to rise, agents and advisors are tasked with a crucial responsibility: to help their clients plan comprehensively, considering not only the joys of retirement but also the inevitable costs of dying. By exploring all available options, from savings and investments to insurance products and life insurance settlements, financial professionals can guide their clients toward peace of mind for themselves and their loved ones. Inflation may be an unyielding force, but with thoughtful planning and strategic advice, navigating the financial aspects of end-of-life can be less burdensome, allowing individuals to focus on living their final days with dignity and grace.
Complete Article ↪HERE↩!