A hospice nurse in America has revealed her experience working in palliative care as well as detailing something many experience in their final months alive.
Los Angeles-based carer, Julie McFadden, took to TikTok last year to explain a common sign of death – ‘Visioning’.
According to End of Life Doula, visioning is when dying people believe they are talking to their deceased loved ones. They can also think that they have come to get them, or that they are in the room with them.
In a clip posted to social media in October 2022, Julie said: “Here is my most comforting fact about death and dying. The craziest things we see on hospice is that most people will start seeing dead relatives, dead loved ones, dead friends, dead pets before they die.”
Continuing on, the 40-year-old said that her patients don’t just start seeing their loved ones days before they die – it can happen up to a month before their death.
“We have no idea why this happens,” Julie elaborated. “We are not claiming that they really are seeing these people. We have no idea.
“But all I can tell you as a healthcare professional, who has worked in this line of work for a very long time, it happens all the time.”
Julie McFadden regularly shares insights into hospice life with her social media followers. Credit: Instagram/@hospicenursejulie
Julie said that visioning happens so frequently that hospice workers regularly work to ‘educate the family and the patient’ on the topic before it commences. This is so that they are not ‘incredibly alarmed when it starts happening’.
She added: “And usually it’s a good indicator that the person is getting close to death, usually a month or a few weeks before they die. This brings me comfort, I hope it brings you comfort.”
Since posting the video last year, Julie’s sentiments have wracked up over 48,000 likes and 570,000 views.
The one-minute clip has also garnered over 1200 comments, with many finding solace in the carer’s admission.
One platform user wrote: “The last morning my mom was coherent she said she could already see my grandma, who died 42 (sic) years ago. In our culture we believe our dead loved ones come to lead you. We know her mom was there ready to welcome her to the other side.”
A second said: “Yep! My mother in law was telling her sister that their mother was packing a suitcase for her trip and picked out a dress for her to wear.”
“Yep I had a patient tell me his dog was on the end of the bed told me full description and name, told his wife made her smile,” said a third.
A medium headed to the comments section and wrote: “Spirit will tell us in a session they are the ones to grab our family at their time of death so they are not alone during the transition.”
Another social media user said: “My mother would often tell me that she just had a talk with my dad or one of her sisters. Started about a month before she passed and they looked good.”
When thinking of a funeral, many people might imagine a congregation of black-dressed folks staring at the ground while sad — perhaps with rain pattering on umbrellas for full, somber effect. But while sorrow itself is a natural response to the loss of life, funerals the world over often take on special flavors depending on culture, history, region, and so forth, some more lively or unusual than others. “Fantasy coffins” are all the rage in Ghana, shaped like lions, rockets, sneakers, Coke bottles, airplanes, you name it. Varanasi, India burns 24-7 funeral pyres to incinerate the dead before tossing their ashes into the Ganges river. Taiwan, meanwhile, has mafia-linked funeral strippers who dance and gyrate above coffins. And in New Orleans? It’s all about exuberance, joie de vivre, and music perfectly befitting them both: jazz.
In a way, nothing could suit New Orleans more than jazz funerals. A fusion of West African, British, Spanish, and French influences combined with Mardi Gras, Black Southern Protestantism, and the spirituals of enslaved Americans, jazz funerals are just as sui generis — a thing of its own — as New Orleans itself. As sites like Vox highlight, jazz funerals mourn the dead, but they also celebrate life and the hope of life after death for the one who’s passed away. Imagine a big, community brass band parade marching through the streets and you’ve got a good idea of what jazz funerals are like.
From the old world to the new
All sources point to New Orleans’ jazz funerals originating with indigenous, festive dance-and-music funeral processions in West African countries like Senegal and Gambia, as Vox explains. The Balch Institute for Ethnic Studies explains that ethnic groups like the Yoruba and Dahomean in the current-day nations of Benin and Togo have similar practices. Such practices revolve around celebrating the soul’s entry into the afterlife and connect to beliefs in the spirit world and a hierarchical cosmic order of God-spirit-human. This is why West African spiritual beliefs — when they arrived in the New World — ironically found a fitting home within predominantly Christian Americas.
Aeon, meanwhile, also cites cultural back-and-forth between New Orleans and nearby Caribbean nations like Haiti as helping give rise to jazz funerals. Notably, Haitian Vodou (also spelled “Voodoo”) retains celebratory practices meant to appease spirits. And of course, as French Quarter says, New Orleans has always been a hotspot for Louisiana Vodou for the same reason it spawned jazz funerals: slavery. From about 1480 C.E. to 1888 C.E., the Transatlantic Slave Trade took enslaved peoples from various African tribes to the Americas. Some of these individuals wound up in New Orleans, founded in 1718 by French-Canadian explorer Jean-Baptiste Le Moyne, Sieur de Bienville. From that point, New Orleans’ syncretic culture brewed.
Brass band, Mardi Gras, and spirituals
New Orleans’ founding as a French city added another critical piece to the jazz funeral puzzle: Mardi Gras, the French incarnation of the Catholic Lenten holiday of Shrove Tuesday, aka Fat Tuesday, the day before Ash Wednesday. As Father William Saunders says on Catholic Culture, Shrove Tuesday was the Catholic liturgical calendar’s” last chance for merriment” before showing restraint during Lent. Traditions date back to ancient Rome, connect to pagan holidays like Saturnalia, were documented by the Anglo-Saxon clergyman Abbot Aelfric in 1,000 C.E., and by the time we get to the founding of New Orleans in 1718 involved celebratory processions and parades down the street, as Mardi Gras New Orleans describes.
New Orleans, meanwhile, was passed to Spain in 1763. It soaked up Spanish culture for 40 years before the U.S. bought it as part of the Louisiana Purchase in 1803. Per Metro, it was common for military brass bands to play funerals during this entire time. Such bands played the same instruments wielded in jazz come the late 1890s, when BBC says the musical form evolved into its familiar, syncopated, up-tempo form. But the roots of jazz, much like jazz funerals, dated back to 1819, shortly after Louisiana became a state in 1812. Per the BBC, enslaved Americans congregated in New Orleans’ Congo Square on free days, where African tribal dances and rhythms fused with colonial influences, brass band instruments, and one final component: Christian spirituals.
When the Saints Go Jazzing On
As 64 Parishes says, the first recorded version of a jazz funeral was witnessed by architect Benjamin Latrobe in 1819. West African influences were plain and apparent from the get-go, as those enslaved people engaged in “ring shouts,” a kind of call-and-response rhythmic dance circle that spins counterclockwise. Funeralwise says that the Catholic church wasn’t too keen on these kinds of gatherings — ironically so, given jazz funeral’s processional, celebratory connection to Mardi Gras. Nevertheless, it fell to Southern Protestant Blacks to engage in “public performances to consolidate a sense of community,” as J. David Maxson writes in Southern Quarterly.
On that note, Visit New Orleans says that jazz funerals typically incorporated the old folk spirituals that passed around the U.S.’ Protestant South, like “Nearer my God to Thee” and “When the Saints Go Marching In.” These spirituals strengthened community and united ancient traditions with present beliefs in a hopeful way. Even modern-day jazz funeral bands like the famed Dirty Dozen Brass Band still focus on spirituals, as their 2004 album “Funeral for a Friend” shows. Song titles include classic spiritual adaptations like “Just a Closer Walk with Thee,” “What a Friend We Have in Jesus,” “Down by the Riverside,” “Amazing Grace,” “John the Revelator,” and more.
Joining the Second Line
After jazz funerals fused with late 19th-century, recognizably modern jazz, they marched unabated into the 20th century. Jazz swept the U.S. in the 1920s following the end of World War I but petered off in popularity in the 1930s because Americans started struggling for disposable income. But come the mid-20th century jazz funerals started becoming more widespread, in part because funerals themselves became more affordable. This was especially the case for well-known New Orleans locals — such as jazz musicians — who were honored with jazzy outros befitting their lives.
It was during this time that jazz funerals took on a standardized structure. Musicians played sad, somber, hymn-like tunes on the way to a cemetery, where a memorial service took place, and then played lively, celebratory music on the way back. This “second line,” as it was called, is the typically bouncy and exuberant part of the jazz funeral that gives it its signature flair, as seen above. Locals could join the procession on the way to the cemetery — provided they were respectful — but more than likely folks joined during the celebratory second half of the funeral. As Ausettua Amor Amenkum of New Orleans’ Tulane University recalls on Vox, “I come from the era when you’re in your house and you hear music and you go ‘Second line!’ and you run outside.”
Modern homecoming ceremonies
Jazz funerals exist to this day and have taken to incorporating other elements of Black American culture, like funk, hip-hop, and rap. Currently, jazz funerals are held not just for jazz musicians or prominent New Orleans personages but also for young people or other members of the local community who died suddenly or tragically. Interestingly, Alive Network says that the 1973 James Bond movie “Live and Let Die” played a significant role in letting the wider world know about jazz funerals. That’s also when the term “jazz funeral” took root. Nowadays, jazz funerals can be found around the U.S. and the entire globe. In 2015, for instance, Memphis hosted a jazz funeral for blues legend B.B. King.
The biggest and most prominent jazz funeral likely happened on August 29, 2006, in the wake of 2005’s Hurricane Katrina. In case readers need reminding, Katrina and its flooding devastated low-lying New Orleans and killed a total of 1,833 people across Louisiana, Mississippi, and Alabama. Funeralwise says that thousands attended the jazz funeral conducted in honor of Katrina’s dead in downtown New Orleans, where residents had stood stranded the year prior.
While not everyone gets a jazz funeral, those interested can hire musicians for the task via agencies like Alive Network, including travel to cities besides New Orleans. And yet, on Vox musician Stafford Agee says, “I never liked considering a funeral being a gig. I’m performing for somebody’s homegoing ceremony.”
A terminally ill federal prisoner, who has been fighting for a compassionate release to die outside of jail, has been granted day parole.
Ed Speidel, a 62-year old prisoner with a terminal lung disease, will be permitted to enter a secure home with round-the-clock medical assistance, his lawyer told CTV News in an email.
Speidel suffers from end-stage chronic obstructive pulmonary disorder (COPD) along with rheumatoid arthritis, and medical tests show his lungs have only 19 per cent function compared to healthy adults.
In July, Speidel spoke about his fear of dying behind bars.
“My biggest fear is dying in jail. I don’t want to die in jail,” Speidel told CTV News in a phone interview, from an office in the Matsqui Institution, a medium-security prison in Abbotsford, B.C.
In July of 2022, Speidel, who has served a total of 41 years in prison requested parole by exception – also known as compassionate or geriatric parole — at a hearing, but his request was rejected.
This year, he obtained legal support and worked on an application for medically assisted death.
Speidel told CTV News that he was arrested for robberies and never hurt any one.
With more than 1,700 (25.6 per cent) prisoners in federal jails 50 years old and older, Speidel is one example of aging offenders increasingly susceptible to life-threatening health risks.
Lisa Crossley, who works with Prisoner Legal Services in Vancouver, told CTV News in July she thinks more options should be provided to terminally ill prisoners.
“For the vast majority of people, if you are terminally ill, what risks do you really pose? I think that should be asked and there should be more options for people for some type of release,” Crossley said.
“It is a matter of public importance that affects many people in federal prison.”
Scientists have witnessed brain patterns in dying patients that may correlate to commonly reported “near-death” experiences (NDEs) such as lucid visions, out-of-body sensations, a review of one’s own life, and other “dimensions of reality,” reports a new study. The results offer the first comprehensive evidence that patient recollections and brain waves point to universal elements of NDEs.
During an expansive multi-year study led by Sam Parnia, an intensive care doctor and an associate professor in the department of medicine at NYU Langone Health, researchers observed 567 patients in 25 hospitals around the world as they underwent cardiopulmonary resuscitation (CPR) after suffering cardiac arrest, most of which were fatal.
Electroencephalogram (EEG) brain signals captured from dozens of the patients revealed that episodes of heightened consciousness occurred up to an hour after cardiac arrest. Though most of the patients in the study were sadly not resuscitated by CPR, 53 patients were brought back to life. Of the survivors, 11 patients reported a sense of awareness during CPR and six reported a near-death experience.
Parnia and his colleagues suggest that the transition from life to death can trigger a state of disinhibition in the brain that “appears to facilitate lucid understanding of new dimensions of reality—including people’s deeper consciousness—all memories, thoughts, intentions and actions towards others from a moral and ethical perspective,” a finding with profound implications for CPR research, end-of-life care, and consciousness, among other fields, according to a new study published in Resuscitation.
Patients who survive cardiac arrest “have consistently reported that even though from the perspective of doctors like myself—who try to revive them when they appear to be in a coma and totally unresponsive, teetering between life and death—from their own inner perspective, they find that they’re fully conscious,” Parnia said in a call with Motherboard. “They have an inner experience and their consciousness is not only there but it’s heightened to a level that they’ve never experienced before. Their thoughts become sharper than usual, and clearer than usual.”
“Importantly, this experience also involves a purposeful, meaningful reevaluation of their entire life,” he continued. “Not just random moments, but the entirety of their life. It’s been a mystery, and it’s not one or two anecdotes. There have been a number of studies that have suggested maybe up to 10 percent of the adult population is living with one of these experiences, which if you do the math probably works out to 400 or 500 million people in the world.”
Given the sheer ubiquity and common themes of these NDEs, Parnia and his colleagues set out to search for specific brain waves in dying people that might be linked to the experiences that are so often reported by survivors of close calls with death. Between 2017 and 2020, the team studied hundreds of comatose patients who were undergoing CPR at hospitals in the United Kingdom and the United States. Getting EEG readings in such an intense environment is understandably challenging, and researchers had to record brain activity in the brief breaks between chest compressions. But they succeeded in capturing transient biomarkers of lucid consciousness in several patients long after initial cardiac arrest.
“One of the things that was unique about this project is that this was the first time ever where scientists had put together a method to examine for signs of lucidity and consciousness in people as they’re being revived by looking for brain markers, or brain signatures of consciousness, using an EEG device as well as a brain oxygen monitor,” Parnia explained.
“Most doctors are taught and believe that the brain dies after about five or 10 minutes of oxygen deprivation,” Parnia said. “One of the key points that comes out of this study is that that is actually not true. Although the brain flatlines after the heart stops, and that happens within seconds, it doesn’t mean that it’s permanently damaged and [has] died. It’s just hibernating. What we were able to show is that actually, the brain can respond and restore function again, even after an hour later, which opens up a whole window of opportunity for doctors to start new treatments.”
Indeed, the study reports that “near-normal/physiological EEG activity (delta, theta, alpha, beta rhythms) consistent with consciousness and a possible resumption of a network-level of cognitive and neuronal activity emerged up to 35–60 minutes into CPR. This is the first report of biomarkers of consciousness during CA/CPR.”
These findings are in line with a wave of recent studies focused on the experiences of dying people, which includes reports of surges of brain activity during death, evidence of a gradual shift to death (as opposed to a sudden event), and common themes in near-death experiences.
Parnia and his colleagues also interviewed 28 survivors of cardiac arrest about their brushes with death. The team note that the vivid experiences that patients report on the border of life and death are highly distinct from dreams and hallucinations that might occur during the days or weeks of recovery from their cardiac arrest.
Indeed, people from all different backgrounds and cultures tend to report near-death experiences with similar elements, such as an out-of-body journey back to a comforting place like a childhood home, where the person’s life is reviewed in detail through a moral lens, followed by an intuition to return back to the body. The team suggested that these common experiences, which also include glimpses of new dimensions of reality, are triggered by the brain’s disinhibition during death, which enables episodes of heightened consciousness that are inaccessible to the living.
“When you looked at the recalled experience of death, and these were actually among a global population, the themes were all consistent,” Parnia said. “Our conclusion is that this is a real experience that emerges only with death. As we transition from life to death, somehow, this experience occurs.”
“We’re discovering essentially what happens to us all when we go through death; what happens to our consciousness,” he concluded. “Our plans are to do more comprehensive methods of analyzing what’s happening in the brain second-by-second, to essentially map out the neurophysiology of life and death in people as they go through it.”
Recently, I’ve been reminded again how much words matter. And especially so when it comes to talking or writing about the death of a dear one.
For example, a friend told me she really is not a fan of the word bereaved. She prefers the word alone. I get it, and this is probably a better word for several reasons.
The death of a spouse or partner certainly results in a lot of aloneness. But it’s not limited to partners. The death of a parent, best friend, child or other dear one can leave one feeling very alone. It’s bigger and more personal word than bereaved.
In another example, a friend said she doesn’t care for the word grief anymore. The way I understood it, she meant that, as she had been learning how to cope with the death of her beloved spouse, the word grief felt as if it’s drawing her backward. This at a time she’s trying to adjust going forward without him. This made me stop and think.
I think these are two reminders of how complicated it is to talk about death, and how personal it is. So I started reflecting on myself. And I realized I have quite a list of do’s and don’ts as well! Mine center on common euphemisms. For instance, I personally avoid words such as lost, passed, passed away, late, taken, departed and other euphemisms. I would rather hear or read the actual word — died. Especially when it comes to my own loved ones.
In one episode of “Downton Abbey,” actress Maggie Smith, who played the role of dowager Lady Grantham, had a visitor. When that person referred to her husband as “was taken,” she said something like this: Lord Grantham was not taken, he died.
Now I realize not everyone feels as strongly as I do about this topic. And I realize these other words are in very common usage, and friends and family do not mean to upset or irritate us by using them. Actually, even many clergy and funeral directors use those very euphemisms. So be it. And they are commonly written in obituaries and used in eulogies.
We already are well aware that most people struggle with what to write in a card or note to a friend. But how to refer directly to the person who died is a somewhat different challenge.
So what is the point? Well, I think it’s basically we need to figure out what your friend or relative prefers. It’s complicated of course. You may know the person well enough to know what to say. But a surefire way to know is — just listen to them. You will hear the right word.
Celebrating a new year — as Jews the world over will do this week, when Rosh Hashana begins on Friday at sunset — is all about making changes. It’s a time for new beginnings, for wiping the slate clean and starting over from scratch. In that spirit, on Rosh Hashana Jews say prayers and listen to readings that celebrate the creation of the world and of human life.
But Rosh Hashana also strikes a different, seemingly discordant note. Unlike so many other New Year’s traditions, the Jewish holiday asks those who observe it to contemplate death. The liturgy includes the recitation of a poem, the Unetaneh Tokef, part of which is meant to remind Jews that their lives might not last as long as they’d hope or expect. “Who will live and who will die?” the poem asks. “Who will live out their allotted time and who will depart before their time?”
And we’re not talking about a gentle death at the end of a reasonably long life; we’re talking about misfortunes and tragedies that can cut any of our lives short. “Who shall perish by water and who by fire,” the poem continues, “Who by sword and who by wild beast / Who by famine and who by thirst / Who by earthquake and who by plague?”
This focus on death might seem misplaced, bringing gloom to the party. But as a research scientist who studies the psychological effects of spiritual practices, I believe there is a good reason for it: Contemplating death helps people make decisions about their future that bring them more happiness. This is an insight about human nature that the rites of Rosh Hashana capture especially well, but it’s one that people of any faith (or no faith at all) can benefit from.
When planning for the future, people typically focus on things that they think will make them happy. But there’s a problem: Most people don’t usually know what will truly make them happy — at least not until they are older. Across the globe, research shows, people’s happiness tends to follow a U-shaped pattern through life: Happiness starts decreasing in one’s 20s, hits its nadir around age 50 and then slowly rises through one’s 70s and 80s, until and unless significant health issues set in.
Why the turnaround at 50? That’s when people typically start to feel their mortality. Bones and joints begin to creak. Skin starts to sag. And visits to the doctor become more frequent and pressing. Death, hopefully, is still a good ways off, but it’s visible on the horizon.
You might think this morbid prospect would further decrease contentment, but it ends up having the opposite effect. Why? Because it forces us to focus on the things in life that actually bring us more happiness. Research by the Stanford psychologist Laura Carstensen has shown that as we age, we move from caring most about our careers, status and material possessions to caring most about connecting with those we love, finding meaning in life and performing service to others.
That’s a wise move. When people in the Western world want to be happier, research shows, they tend to focus on individual pursuits. But that same research confirms that this strategy doesn’t work well: Pursuing happiness through social connection and service to others is a more reliable route.
Of course, you don’t have to be old to confront death. During the SARS outbreak and the Covid pandemic, younger adults changed what they valued, research showed. When death suddenly seemed possible for anyone, even those in the prime of their lives, younger people’s opinions about how best to live suddenly began to look like those of seniors: They turned toward family and friends, finding purpose in social connection and helping others.
You don’t even need to face something as drastic as a pandemic to experience some version of these changes. Research shows that simply asking people to imagine that they have less time left, as congregants do on Rosh Hashana, is sufficient.
Rosh Hashana hardly has a monopoly on this insight. Christian thinkers such as Thomas à Kempis and St. Ignatius of Loyola urged people to contemplate death before making important choices. Stoics like Marcus Aurelius argued that meditating on mortality helped people find more joy in daily life.
But the particular brilliance of Rosh Hashana is that it combines thoughts of death with a new year’s focus on a fresh start. As work by the behavioral scientist Katy Milkman and her colleagues has shown, temporal landmarks like New Year’s Day offer an effective opportunity for a psychological reset. They allow us to separate ourselves from past failures and imperfections — a break that not only prods us to consider new directions in life but also helps us make any changes more effectively.
There is a lesson and an opportunity here for everyone. Contemplate death next Jan. 1 (or whenever you celebrate the start of a new year). Any brief moments of unease will be well worth the payoff.
The one big thing that people have in common is that we all will die, and we likely will experience the death of someone we love, too.
And yet despite this shared future, death can be hard to talk about, because it’s not an experience that anyone can report back from to say how it went. When you or a loved one starts approaching death, the existential stakes can go from theoretical to personal, sometimes feeling emotionally, physically and spiritually fraught.
That’s why it can help to hear the insights of people who see death all the time, because understanding it now can help us better process grief about others and feel more at ease when thinking about our own mortality.
I had conversations with palliative and hospice care physicians, nurses and social workers that comforted me, surprised me and challenged my own assumptions about death. Maybe they will for you, too.
Here are some of the biggest misunderstandings they shared with me about death and what the reality actually is:
The physical process of dying doesn’t look like it does in the movies.
This was a repeated theme among the experts I spoke with. Pop culture may have you thinking that death happens quietly and quickly, with eyes closing and arms crossed, but dying from natural causes often looks different in real life.
“My own dad said to the nurse, ‘I’m about ready to hang it up,’ and then he died minutes later. But that type of death is very uncommon,” said Penny Smith, a hospice quality manager and registered nurse in Washington state.
In her decadeslong career, Smith said she’s only come across a few instances in which people died quickly.
“It’s usually more of a process where they go into that unresponsive state, and there’s all kinds of things going on with their body. Their color’s changing, their breathing is changing and then they finally slip away,” she said.
Smith started posting TikTok videos about working in hospice care during the COVID-19 pandemic shutdown of 2020 and has since amassed around 640,000 followers on the platform. She uses skits and sound effects to educate people on what it’s like to be in the room with someone who is dying, covering topics like deathbed visions to the sounds that dying people make.
Common responses to her TikToks are comments of relief, acceptance and commiseration at seeing someone describe an experience that resembles how their own loved ones died.
“I, as a hospice nurse, have been with so many families where they were really disturbed by what they were seeing, or scared. And I would say: ‘That’s normal. We see that all the time.’ The relief is palpable,’” Smith said.
In one TikTok, Smith explains that when a person’s body is “shutting down,” it’s normal if they do not want water. A top comment on the video reads: “Thank you for this. My mom stopped drinking when we knew she was going to pass and I still felt like I should have tried to have her drink water more.”
Among all the physical processes of dying, Smith said the biggest misunderstanding she sees is when family members worry that their loved ones are dying of starvation because they’ve stopped wanting to eat.
“These are people who are already dying. They don’t need the food,” Smith said. “And when the family starts to try to force them or coerce them into eating just by, ‘Come on, just have a bite just to eat something,’ it just sets up so much stress between the family and the person.”
Similarly, families often worry that the use of morphine and other opiates will hasten the death of loved ones, according to Frances Eichholz-Heller, a senior social worker for the palliative care consult service at NewYork-Presbyterian/Columbia University Irving Medical Center.
“Some people will say to me, ‘Well, we had an uncle who was in the hospital dying, and then as soon as they put the morphine on, he died really quickly,’” Eichholz-Heller said. “I have to explain to them: ‘Well, he probably died really quickly because he was dying. He wasn’t dying because of the morphine, but they put him on the morphine to help.’”
Families can live with a lot of regret over what they should have done.
If you are seeking to support a loved one who is dying, be mindful of how your own fear and discomfort could impact what a dying person shares with you, said Dr. Aditi Sethi, a North Carolina-based hospice physician and end-of-life doula.
According to Sethi, some dying people try to talk about their experience with loved ones but the families dismiss it because of their own discomfort, using language like “You’re not dying, don’t worry about it.”
“So many times, loved ones have the most regret,” Sethi said. “They’re so terrified of losing their loved one that they can’t be fully present to their loved one at the time when they need them the most, really — to hold their hand and to really honor what they’re going through, and have a space to share what they’re experiencing in this epic journey they’re about to embark on.”
But if you had a strained relationship with the person before they were dying, don’t feel like you have to force a connection that is not authentic, either. “Your relationship with the dying person is personal, and if you didn’t have a good relationship, you are not obligated to go and be with that person,” Smith said.
It’s also important to provide space for people to be themselves when they are grieving, said Ladybird Morgan, a California-based registered nurse, palliative care consultant for the company Mettle Health, and co-founder of the Humane Prison Hospice Project nonprofit.
“I really ultimately believe that what happens is what needs to happen. And I see a lot of suffering for families that get left behind when they feel like they should have done something different,” Morgan said. “You grieve the way you’re going to grieve. You let go the way you’re going to let go. I tend to want to be careful about saying, ‘You should do X, Y and Z.’”
Not everyone wants silence or a somber mood when they are dying.
Health care providers and family members can make assumptions about what a dying person would find comfortable, without considering what that person truly enjoys. Some people may desire silence, but others may welcome raucous celebrations.
Smith recalled worrying about a football game party happening in the room of a dying woman until one of the patient’s adult sons reassured Smith that this was her passion.
″[The son] said: ‘Oh, my gosh, she was the queen of football parties every Sunday [with] everybody in the neighborhood. Yes, she loves this,’” Smith said. “I was new in my hospice career and making assumptions about what I thought a dying person would want. I thought they would want a quiet, dark room, and that’s not necessarily the truth.”
Not enough people plan or talk about how they want to die.
Most Americans say that given the choice, they would prefer to die at home, but about 1 in 5 deaths in the U.S. occur after admission to an intensive care unit. In the book “Extreme Measures: Finding a Better Path to the End of Life,” Dr. Jessica Zitter details what she calls the “end-of-life conveyor belt” — a type of care in which dying ICU patients receive painful treatments to be kept at alive at all costs.
“Unfortunately, by the time someone is on the conveyor belt, it’s often too late to talk to them about what they want. And then everybody is trying to play catch-up. And it’s hard to get it right when the chips are down and there’s so much emotion,” said Zitter, who specializes in palliative medicine and critical care.
“So my recommendation is to talk about these issues early on in life, maybe starting when you become an adult. Start to think about your mortality, and visualize how you would want things to go for you when you get into that stage of life, the end stage. Communicate honestly.”
“The people that I notice that have the least amount of distress are the ones … [who] have lived really fully, and that they can say to themselves, ‘I was here.’”
– Ladybird Morgan, a palliative care consultant at Mettle Health.
Filling out forms for so-called advance care planning goes a long way. But “it’s as important that you, number one, identify a person you trust — or two or three [people] — that can honor your wishes,” Sethi said, “and have the conversations ahead of time, before you’re in the state where you can’t communicate your needs and wishes.”
Some hospice workers recommended Five Wishes, an advance care planning program, as one way to get clarity on how you want things to go.
Morgan recommended playing a card game called GoWish with a friend, a partner or someone else you hope will follow your end-of-life wishes. “[The cards] have different statements on them about possibilities of what you might want or not want,” she said. “And you make stacks of the ones that you like, the ones that you know you don’t care about, and the ones that you’re not sure about.”
Someone playing the game may find it difficult to choose which cards represent their values, which is why Morgan suggests having two people play together, so that it can be a conversation starter.
Keep in mind that there is no one right way to die, and preferences may differ.
“There are people who feel that every moment of life is precious and that they value the length of life over the quality of life,” Eichholz-Heller said. “So they are willing to endure a certain amount of suffering to be able to be kept alive. Then there are other people who value quality of life over length of life. And they would rather focus on comfort, even if it means that they won’t live as long.”
There are still a lot of negative associations with hospice care, even though it can be helpful.
There’s a difference between palliative care and hospice. Palliative care workers help to make patients comfortable at any stage of their life if they’re suffering; hospice is a medical service specifically for people with a short-term life expectancy. While anyone living with a serious illness can seek palliative care, Medicare will help cover hospice care costs for people in the U.S. if their health care provider certifies that they are terminally ill and have six months or less to live.
Some people wrongfully assume that going into hospice automatically shortens the life of a patient. Smith said she has been called a murderer for working in hospice care, adding that the worst myth about hospice workers is that they kill their patients.
“People think that when you go on hospice, it’s a death sentence and that death is imminent,” Smith said. She cited former President Jimmy Carter, who entered hospice care in February and is still alive today, as one prominent example of how that is not always the case.
In fact, research shows that seeking palliative care at an early point can improve quality of life. Published in 2010, one study on advanced lung cancer patients found that offering early palliative care on an outpatient or ambulatory basis led to fewer clinically significant depressive symptoms and a longer median survival.
“When patients are suffering, they use so much of their energy just to fight the suffering that if we can make them comfortable, they sort of stabilize,” Eichholz-Heller said. “And a lot of times, it really helps them to live longer.”
Hospices can differ in their approach to care and the additional services they offer. There are resources that can help you figure out the right questions to ask to select the best hospice for you or a loved one.
We can’t control death.
There can also be a misunderstanding about the medical community’s ability to defeat death — even from health care workers themselves.
“The biggest misunderstanding that I see [among] patients, families and even health professionals around the issue of death is that we think we can control it,” said Dr. Solomon Liao, a UCI Health physician in California who specializes in palliative medicine and geriatric pain management.
“We believe that with all of our machines, technology and medications, we can determine when or even if that happens. Instead of accepting death as a natural endpoint of this life, we get depressed and even angry when it happens. We avoid planning for it or even talking about death, and then are shocked when it happens.”
The reality is that we can’t control death ― and we’ll all experience it at some point. “The people that I notice that have the least amount of distress are the ones — not so much that they’ve controlled every element, but that they have lived really fully, and that they can say to themselves, ‘I was here,’” Morgan said. “And people around them can honor that and acknowledge that like, ‘Yeah, we saw you, we felt you.’ … And that was so important for them, allowed a deep relaxing into what was coming next.”
At the same time, it’s OK not to be ready.
Morgan said many conversations around death and dying have focused on making sure someone is ready and not as much on cases in which a person loves life until the last minute and is not ready to go.
“It’s OK to miss life,” she said. She recalled talking to a client about how he knew everyone else was going to be all right after he died, and how that was heartbreaking for him.
In our conversations, hospice and palliative care providers suggested that it’s helpful to keep an open mind about death — leaving space for it to be “both and,” as Morgan told me.
Death can be devastatingly sad, but it doesn’t only have to be a somber occasion, as Smith’s TikTok skits show. Dying may be painful due to a terminal illness, but it’s not inherently so, Sethi said.
“It can be positive and hard,” Morgan said. “It can be, ‘It was exactly what needed to happen, and they had a beautiful death’ and ‘Wow, was that hard to see them go because I would’ve loved to have had them around for 10 more years.’”
