What People Actually Say Before They Die

Insights into the little-studied realm of last words

By

Mort Felix liked to say that his name, when read as two Latin words, meant “happy death.” When he was sick with the flu, he used to jokingly remind his wife, Susan, that he wanted Beethoven’s “Ode to Joy” played at his deathbed. But when his life’s end arrived at the age of 77, he lay in his study in his Berkeley, California, home, his body besieged by cancer and his consciousness cradled in morphine, uninterested in music and refusing food as he dwindled away over three weeks in 2012. “Enough,” he told Susan. “Thank you, and I love you, and enough.” When she came downstairs the next morning, she found Felix dead.

During those three weeks, Felix had talked. He was a clinical psychologist who had also spent a lifetime writing poetry, and though his end-of-life speech often didn’t make sense, it seemed to draw from his attention to language. “There’s so much so in sorrow,” he said at one point. “Let me down from here,” he said at another. “I’ve lost my modality.” To the surprise of his family members, the lifelong atheist also began hallucinating angels and complaining about the crowded room—even though no one was there.

Felix’s 53-year-old daughter, Lisa Smartt, kept track of his utterances, writing them down as she sat at his bedside in those final days. Smartt majored in linguistics at UC Berkeley in the 1980s and built a career teaching adults to read and write. Transcribing Felix’s ramblings was a sort of coping mechanism for her, she says. Something of a poet herself (as a child, she sold poems, three for a penny, like other children sold lemonade), she appreciated his unmoored syntax and surreal imagery. Smartt also wondered whether her notes had any scientific value, and eventually she wrote a book, Words on the Threshold, published in early 2017, about the linguistic patterns in 2,000 utterances from 181 dying people, including her father.

Despite the limitations of this book, it’s unique—it’s the only published work I could find when I tried to satisfy my curiosity about how people really talk when they die. I knew about collections of “last words,” eloquent and enunciated, but these can’t literally show the linguistic abilities of dying people. It turns out that vanishingly few have ever examined these actual linguistic patterns, and to find any sort of rigor, one has to go back to 1921, to the work of the American anthropologist Arthur MacDonald.To assess people’s “mental condition just before death,” MacDonald mined last-word anthologies, the only linguistic corpus then available, dividing people into 10 occupational categories (statesmen, philosophers, poets, etc.) and coding their last words as sarcastic, jocose, contented, and so forth. MacDonald found that military men had the “relatively highest number of requests, directions, or admonitions,” while philosophers (who included mathematicians and educators) had the most “questions, answers, and exclamations.” The religious and royalty used the most words to express contentment or discontentment, while the artists and scientists used the fewest.

MacDonald’s work “seems to be the only attempt to evaluate last words by quantifying them, and the results are curious,” wrote the German scholar Karl Guthke in his book Last Words, on Western culture’s long fascination with them. Mainly, MacDonald’s work shows that we need better data about verbal and nonverbal abilities at the end of life. One point that Guthke makes repeatedly is that last words, as anthologized in multiple languages since the 17th century, are artifacts of an era’s concerns and fascinations about death, not “historical facts of documentary status.” They can tell us little about a dying person’s actual ability to communicate.

Some contemporary approaches move beyond the oratorical monologues of yore and focus on emotions and relationships. Books such as Final Gifts, published in 1992 by the hospice nurses Maggie Callanan and Patricia Kelley, and Final Conversations, published in 2007 by Maureen Keeley, a Texas State University communications-studies scholar, and Julie Yingling, professor emerita at Humboldt State University, aim to sharpen the skills of the living for having important, meaningful conversations with dying people. Previous centuries’ focus on last words has ceded space to the contemporary focus on last conversations and even nonverbal interactions. “As the person gets weaker and sleepier, communication with others often becomes more subtle,” Callanan and Kelley write. “Even when people are too weak to speak, or have lost consciousness, they can hear; hearing is the last sense to fade.”

I spoke to Maureen Keeley shortly after the death of George H. W. Bush, whose last words (“I love you, too,” he reportedly told his son, George W. Bush) were widely reported in the media, but she said they should properly be seen in the context of a conversation (“I love you,” the son had said first) as well as all the prior conversations with family members leading up to that point.

At the end of life, Keeley says, the majority of interactions will be nonverbal as the body shuts down and the person lacks the physical strength, and often even the lung capacity, for long utterances. “People will whisper, and they’ll be brief, single words—that’s all they have energy for,” Keeley said. Medications limit communication. So does dry mouth and lack of dentures. She also noted that family members often take advantage of a patient’s comatose state to speak their piece, when the dying person cannot interrupt or object.

Many people die in such silence, particularly if they have advanced dementia or Alzheimer’s that robbed them of language years earlier. For those who do speak, it seems their vernacular is often banal. From a doctor I heard that people often say, “Oh fuck, oh fuck.” Often it’s the names of wives, husbands, children. “A nurse from the hospice told me that the last words of dying men often resembled each other,” wrote Hajo Schumacher in a September essay in Der Spiegel. “Almost everyone is calling for ‘Mommy’ or ‘Mama’ with the last breath.”

It’s still the interactions that fascinate me, partly because their subtle interpersonal textures are lost when they’re written down. A linguist friend of mine, sitting with his dying grandmother, spoke her name. Her eyes opened, she looked at him, and died. What that plain description omits is how he paused when he described the sequence to me, and how his eyes quivered.

But there are no descriptions of the basics of last words or last interactions in the scientific literature. The most linguistic detail exists about delirium, which involves a loss of consciousness, the inability to find words, restlessness, and a withdrawal from social interaction. Delirium strikes people of all ages after surgery and is also common at the end of life, a frequent sign of dehydration and over-sedation. Delirium is so frequent then, wrote the New Zealand psychiatrist Sandy McLeod, that “it may even be regarded as exceptional for patients to remain mentally clear throughout the final stages of malignant illness.” About half of people who recover from postoperative delirium recall the disorienting, fearful experience. In a Swedish study, one patient recalled that “I certainly was somewhat tired after the operation and everything … and I did not know where I was. I thought it became like misty, in some way … the outlines were sort of fuzzy.” How many people are in a similar state as they approach death? We can only guess.

We have a rich picture of the beginnings of language, thanks to decades of scientific research with children, infants, and even babies in the womb. But if you wanted to know how language ends in dying people, there’s next to nothing to look up, only firsthand knowledge gained painfully.

Lisa Smartt at her father, Mort Felix’s bedside

After her father died, Lisa Smartt was left with endless questions about what she had heard him say, and she approached graduate schools, proposing to study last words academically. After being rebuffed, she began interviewing family members and medical staff on her own. That led her to collaborate with Raymond Moody Jr., the Virginia-born psychiatrist best known for his work on “near-death experiences” in a 1975 best-selling book, Life After Life. He has long been interested in what he calls “peri-mortal nonsense” and helped Smartt with the work that became Words on the Threshold, based on her father’s utterances as well as ones she’d collected via a website she called the Final Words Project.

One common pattern she noted was that when her father, Felix, used pronouns such as it and this, they didn’t clearly refer to anything. One time he said, “I want to pull these down to earth somehow … I really don’t know … no more earth binding.” What did these refer to? His sense of his body in space seemed to be shifting. “I got to go down there. I have to go down,” he said, even though there was nothing below him.

He also repeated words and phrases, often ones that made no sense. “The green dimension! The green dimension!” (Repetition is common in the speech of people with dementia and also those who are delirious.) Smartt found that repetitions often expressed themes such as gratitude and resistance to death. But there were also unexpected motifs, such as circles, numbers, and motion. “I’ve got to get off, get off! Off of this life,” Felix had said.

Smartt says she’s been most surprised by narratives in people’s speech that seem to unfold, piecemeal, over days. Early on, one man talked about a train stuck at a station, then days later referred to the repaired train, and then weeks later to how the train was moving northward.

“If you just walk through the room and you heard your loved one talk about ‘Oh, there’s a boxing champion standing by my bed,’ that just sounds like some kind of hallucination,” Smartt says. “But if you see over time that that person has been talking about the boxing champion and having him wearing that, or doing this, you think, Wow, there’s this narrative going on.” She imagines that tracking these story lines could be clinically useful, particularly as the stories moved toward resolution, which might reflect a person’s sense of the impending end.

In Final Gifts, the hospice nurses Callanan and Kelley note that “the dying often use the metaphor of travel to alert those around them that it is time for them to die.” They quote a 17-year-old, dying of cancer, distraught because she can’t find the map. “If I could find the map, I could go home! Where’s the map? I want to go home!” Smartt noted such journey metaphors as well, though she writes that dying people seem to get more metaphorical in general. (However, people with dementia and Alzheimer’s have difficulty understanding figurative language, and anthropologists who study dying in other cultures told me that journey metaphors aren’t prevalent everywhere.)

Even basic descriptions of language at the end of life would not only advance linguistic understanding but also provide a host of benefits to those who work with dying people, and dying people themselves. Experts told me that a more detailed road map of changes could help counter people’s fear of death and provide them with some sense of control. It could also offer insight into how to communicate better with dying people. Differences in cultural metaphors could be included in training for hospice nurses who may not share the same cultural frame as their patients.

End-of-life communication will only become more relevant as life lengthens and deaths happen more frequently in institutions. Most people in developed countries won’t die as quickly and abruptly as their ancestors did. Thanks to medical advances and preventive care, a majority of people will likely die from either some sort of cancer, some sort of organ disease (foremost being cardiovascular disease), or simply advanced age. Those deaths will often be long and slow, and will likely take place in hospitals, hospices, or nursing homes overseen by teams of medical experts. And people can participate in decisions about their care only while they are able to communicate. More knowledge about how language ends and how dying people communicate would give patients more agency for a longer period of time.

But studying language and interaction at the end of life remains a challenge, because of cultural taboos about death and ethical concerns about having scientists at a dying person’s bedside. Experts also pointed out to me that each death is unique, which presents a variability that science has difficulty grappling with.

And in the health-care realm, the priorities are defined by doctors. “I think that work that is more squarely focused on describing communication patterns and behaviors is much harder to get funded because agencies like NCI prioritize research that directly reduces suffering from cancer, such as interventions to improve palliative-care communication,” says Wen-ying Sylvia Chou, a program director in the Behavioral Research Program at the National Cancer Institute of the National Institutes of Health, who oversees funding on patient-doctor communication at the end of life.

Despite the faults of Smartt’s book (it doesn’t control for things such as medication, for one thing, and it’s colored by an interest in the afterlife), it takes a big step toward building a corpus of data and looking for patterns. This is the same first step that child-language studies took in its early days. That field didn’t take off until natural historians of the 19th century, most notably Charles Darwin, began writing down things their children said and did. (In 1877, Darwin published a biographical sketch about his son, William, noting his first word: mum.) Such “diary studies,” as they were called, eventually led to a more systematic approach, and early child-language research has itself moved away from solely studying first words.

“Famous last words” are the cornerstone of a romantic vision of death—one that falsely promises a final burst of lucidity and meaning before a person passes. “The process of dying is still very profound, but it’s a very different kind of profoundness,” says Bob Parker, the chief compliance officer of the home health agency Intrepid USA. “Last words—it doesn’t happen like the movies. That’s not how patients die.” We are beginning to understand that final interactions, if they happen at all, will look and sound very different.

Complete Article HERE!

The Choices We Make for Others at the End of Life

A palliative care nurse explains what to expect in the last days and hours.

A dying person’s attention turns toward a place we do not see and that they cannot explain. They are done with the business of the living, as it were, and more or less finished with us.

Excerpted from Advice for Future Corpses by Sallie Tisdale.

In Advice for Future Corpses, author and palliative care nurse Sallie Tisdale shares insight and contemplation into what constitutes a good death. Managing our own avoidance and fear, she writes, is key to shepherding a peaceful final passage. Here she describes what to expect, and consider, during the last days and hours.

Death takes many forms. One death is anticipated over months. Another death is stunningly abrupt. And now and then death is held back by technology. I have seen how these deaths are different, and they are all the same, in the end: A person breathes and then breathes no more. He enters a stillness like no other. Breath. Another breath, and then no more. But when the breaths are made by a machine or the blood pressure is sustained by powerful drugs, someone has to make an awful decision.

Many aspects of medical and nursing care become unnecessary or intrusive for a dying person. Will the result of a lab test change the plan? If not, then don’t do it. Why take another vitamin? Are you really worried about the cholesterol level at this point? You don’t need to check blood pressure routinely. But sometimes a person is already hooked up—intravenous fluids and drugs to raise blood pressure and support for breathing—and the only way to stop the intrusion is to unhook. The advent of machines like defibrillators and ventilators created a new kind of crisis for the dying. (One report from the time referred to “this era of resuscitatory arrogance.”) A lecture in 1967 about how medicine should define death was called “The Right to Be Let Alone.”

Futility is a legal term in health care. A doctor, a team of people, even a hospital, can invoke futility and refuse to continue treatment that only prolongs suffering. This doesn’t happen immediately; it’s a drawn-out, painful process. The vocabulary makes everything worse. Doctors speak almost glibly about “withdrawing” or “withholding” treatment. The nurse says, “There’s nothing more to be done.” Which is a stupid thing to say, because there are all kinds of things to be done; they just don’t involve trying to keep someone alive. Such comments create a terrible sense of culpability in a heartbroken spouse or child. But what is really being done is good care.

Journalist and author Virginia Morris pleads for a change of terms: “When we take a terminally ill patient off life support, we are not ‘pulling the plug,’ we are ‘freeing’ the patient to die. We are ‘releasing’ her from excessive technology and invasive treatments. When we allow death to happen, we are not killing people, we are caring for them. We are loving them.”

We want to put it off as long as possible. Even if we are sure that Mom or Dad wouldn’t want to be kept alive “on a machine,” in the moment of crisis when everyone is yelling at us to decide, we’re not prepared. We literally have no experience making such a decision; we may do it only once in our lives. 

The hardest part is the loss, but a close second is the need to shove your own fears and desires to the side. Surgeon and bioethicist Sherwin Nuland said that at the time when decisions about life support and life-prolonging treatments are being made, “everybody becomes enormously selfish.” He emphatically includes doctors and nurses in with the family. We may not recognize that selfishness is driving the words we choose or the kind of advice that’s given. Doctors may not have any idea they are doing this. When they offer yet another experimental drug, they may genuinely believe they know what’s best for the patient. But best: Best is subjective. Best is your point of view. Best is what you want.

Being able to make a decision like this for another requires an understanding of each other, and time for self-reflection. You have to consider the painful, scary, and unwanted fact of separation. You are the proxy for the person in the bed. What she wants is all that counts. You want the person to live. Or you want the person to die your version of a “good” death. Or you want him to live another week until the rest of the family arrives. You want the gasping holler of pain in your chest to go away. Can you choose a course of treatment that will allow the person you love most in the world to die? Can you say no on their behalf to something you would choose for yourself? Can you say yes on their behalf to an end you would never want? Can you set your own beliefs to the side? This inevitable conflict of interest—you are dying and I want you to live—is why a spouse or close family member often should not be the one making all the decisions. You have to ignore the begging chorus in your head, because it’s not about what you want.

In an old Japanese tradition, a person writes a poem on New Year’s Eve that will be read at their funeral if they die in the coming year. A modern addition to this practice includes having a professional funeral photograph taken and picking out the clothing you want to wear, in styles specially made for corpses. The Japanese word jōjū means ever-present or unchanging. I like the translation “everlasting.” The image of jōjū is often the moon. How can the moon, which is never the same from night to night, be everlasting? And yet it is always the same moon. Jōjū is that quality of unstoppable change and the eternal at once. Death comes even while we are alive.

In the early 1700s, Mizuta Masahide, an admirer of the great poet Bashō and a doctor by profession, had a fire at his home. It burned down his storehouse, leaving his family impoverished. His poem that year:

My storehouse burned down.

Now nothing stands between me

And the moon above.

Everlasting.

A dying person’s attention turns toward a place we do not see and that they cannot explain. They are done with the business of the living, as it were, and more or less finished with us. Now they are not a mother or a plumber or a friend. Now they are entirely a dying person, and the world begins to shine. In spite of going hours without speaking, in spite of needing help to button a shirt, he is busy. He may not have the energy to talk, because he is waiting for something and that takes everything he has left.

He may be waiting to understand why.

Laugh. Laugh! Sing. The last kiss, the last dream, the last joke to tell. I have been telling you all the many things we might say, and shouldn’t. Things to say as the end is coming: I love you. I hope the best for you. We will be all right. Go with peace.

Then we are listening again. We are returning to stillness, and to hearing what is being said without words. Most of us are not used to silence. It takes getting used to. The background noise of our lives is near-constant: endless voices, television, music, traffic, the ping from incoming texts, the demanding requests of daily life. Because we aren’t used to silence, we don’t understand how to be in it, how full it is. We may struggle against it, but silence is part of this world now. Silence is attention. Attention on this, right here, right now. Attention on the hand against the sheet, the texture of the cotton, the cool cotton. The hand rising to take a cup; the hard, warm curve of the cup. The steam. The heat. The sensation of the bending tendon in the hand, the scratch of a nail along the bedcover. Inhalation. Exhalation. All this in silence, filled with the music between words, what you might call the music of the spheres—the world’s hum. The faint vibration of breath and muscle and time.

The writer Dennis Potter died of pancreatic cancer. A few months before his death, he gave a remarkable interview on the BBC. His wife was also dying, of breast cancer, and he was her main caregiver. He was relaxed and smiling—his pain cocktail was a combination of morphine, champagne, and cigarettes—and full of his signature dark humor. Dying, he said, gave him a new perspective on life; it gave him a way to celebrate.

“The blossom is out in full now,” he said, describing what he saw from his office window. “It’s a plum tree, it looks like apple blossom but it’s white, and looking at it, instead of saying, ‘Oh, that’s a nice blossom’last week looking at it through the window when I’m writing, I see it is the whitest, frothiest, blossomiest blossom that there ever could be, and I can see it. Things are both more trivial than they ever were, and more important than they ever were, and the difference between the trivial and the important doesn’t seem to matter. But the nowness of everything is absolutely wondrous.” He couldn’t really explain, he added; you have to experience it. “The glory of it, if you like, the comfort of it, the reassurance … not that I’m interested in reassuring people, bugger that. The fact is, if you see the present tense, boy do you see it! And boy can you celebrate it.”

He died nine days after his wife.

Patients in end-of-life care to be treated with magic mushrooms

A spokeswoman for Palliative Care Australia said anxiety is a common and distressing symptom for those entering the final stage of their life.

By Benjamin Ansell

Palliative care patients will be treated with the psychoactive ingredient in magic mushrooms in a bid to reduce their anxiety during end of life care.

The first of 30 patients in Melbourne’s St Vincent’s Hospital trial will be treated with psilocybin in April after a year-long battle to have the study approved by the ethics committee, as well as state and federal authorities.

Patients will be given a single dose of the psychedelic drug, which stimulates feelings of euphoria and is believed to be able to ease anxiety, fear and depression for up to six months.

Applicants will be screened, requiring a state government permit to take the medication, and will be closely monitored by two clinicians on the ‘dose day’ while the initial high wears-off.

“With therapists in the room providing therapy it will allow people to have a heightened awareness of their situation, see the problem and work through it,” Mark Bowie, director of Palliative Medicine at St Vincent Hospital, said.

St Vincent’s clinical psychologist Dr Margaret Ross said patients in the study will be given a single dose of the drug in capsule form.

A similar trial conducted at New York University found 70 per cent of patients later reflected on the psilocybin experience as one of the top five most spiritually significant experiences of their entire lives, while 87 per cent reported increased life satisfaction overall.

Vice President of Australia’s Psychedelic Research In Science and Medicine Association Dr Stephen Bright told 9News that the study “sets a precedent” for more research into the medical application of psychoactive substances.

Patients will be treated with the psychoactive ingredient in magic mushrooms.

“I think it’s fantastic this study has been able to obtain the requisite approval, there have been multiple attempts to use psychedelics which have all been knocked back,” Dr Bright said.

“The fact that this has been able to secure approval is very encouraging.”

Dr Bright, also a senior lecturer at Edith Cowen university, is currently attempting to secure funding and ethics approval for another study on the potential of MDMA to be used in the treatment of Post-Traumatic Stress Disorder.

A spokeswoman for Palliative Care Australia told 9News.com.au anxiety is a common and distressing symptom for those entering the final stage of their life.

“This can be triggered by concerns and fears about how they will die, how their families and loved ones will cope as well as existential or spiritual concerns,” the spokeswoman said.

Complete Article HERE!

4 Amazing End-of-Life Celebrations for Beloved Pets

By: Joel Boyce

John Grogan, the author of “Marley and Me,” perfectly sums up the unique love that humans have for their animal companions:

Such short little lives our pets have to spend with us, and they spend most of it waiting for us to come home each day.
It is amazing how much love and laughter they bring into our lives and even how much closer we become with each other because of them.

And he’s far from the only person to lament the short time we have with a beloved pet. After all, we’re together in sickness and health.

So what do you do when your animal friend inevitably faces the end of their life? Here are a few anecdotes that demonstrate just how important pets can be to their human families.

1. Mayor takes cross-country road trip with 10-year-old dog

As the mayor of a town in Massachusetts, Paul Heroux hadn’t taken a vacation in over three years. But that changed when his beloved Mura was diagnosed with an aggressive blood cancer and given only a few months to live.

Heroux dropped everything and embarked on a cross-country road trip that was all about making his dog happy. Mura has even been picking their destinations, apparently pulling him south toward California once they hit the Pacific Coast.

I definitely agree that when going out for a walk or a ride, your dog should be at least as involved in making decisions as you are.

2. Photographer spends 100 days remembering her beloved cat

Preston Gannaway, a Pulitzer Prize-winning photographer, processed her grief for her recently departed best friend, Isis, the only way she knew how: by poring through 17 years worth of photographs to share on Instagram for 100 days.

Sometimes pets are lost suddenly, and we don’t have much time to give a proper goodbye. In Gannaway’s case, she needed months after Isis’s death to finish saying her final farewell. The result is a testament not to a cat’s final days but to her entire life with her human companion.

3. Foster Family Has Goodbye Party for Dying Dog

It doesn’t happen as often, but sometimes it is the animal that loses their human first — and this was the case with Peanut. Fortunately, after her owner died, a rescue shelter and a foster family worked together to ensure that her final days were good ones. They even gave her a big goodbye party – an incredibly kind gesture to celebrate a dog that they had known only a short time but had fallen in love with nevertheless.

I’m sure the owner that predeceased her would have appreciated this loving gesture.

4. Veteran and His Dog Have a Perfect Day

In an excerpt from the book, “Going Home: Finding Peace When Pets Die,” author Jon Katz tells the story of Harry, a former soldier, and his canine best friend Duke. Suffering from a weakening heart, the dog was expected to pass away soon. To celebrate his life, Harry spent an entire day with Duke, visiting all of their favorite places — and even prepared a special dinner of sirloin steak for the animal.

Many little moments in this story make it special, but there are two important takeaways for me. First, Harry didn’t plan this perfect day just before an appointment for euthanasia. He didn’t let the day be soured by the thought that it would be his last day with his dog, because it wasn’t.

Second, this day was not about a huge grand gesture like a big party or a trip, but it was still special. It was all about revisiting and enjoying familiar sights, with a focus on making Duke happy — which, in turn, made Harry happy.

Complete Article HERE!

Death-Positive Movement Fueling Hospice Growth

With more than 1.4 million Americans receiving hospice care every year, the demand for high-quality end-of-life care is only projected to rise in years to come. In Minnesota, a “death-positive” movement is to thank, experts say.

The number of hospice patients in Minnesota has tripled since 2000 and currently accounts for more than half of all deaths in the state, according to an article in the Saint Paul-based Pioneer Press.

While the aging population is growing rapidly, a broader cultural shift is also largely to credit: More doctors are encouraging and accepting of hospice, more mediums are portraying it positively, and more people are discussing and planning for end of life.  

“There is a huge death-positive movement happening now,” Christin Ament, organizer of Death Cafes in the Saint Paul area, told the Pioneer Press.

Death Cafes are just one example. Created in 2004, the concept is to offer a place for people to eat, drink and talk about death. Beyond Minnesota, thousands of death cafes are currently operating in more than 60 countries worldwide.

Similarly, the spike in hospice use transcends any one state. Hospice admissions and utilization in the U.S. continued to rise in the second quarter of 2018, according to the latest trends report from Atlanta-based analytics and metrics firm Excel Health.

Experts say the biggest reason for the shift is a change in attitude among doctors, according to the Pioneer Press. Traditionally, doctors have focused on lengthening life by whatever means necessary, opting for curative care as opposed to services more closely aligned to patient comfort.

“At times, you were fighting against what the body wanted to do,” Lindsey Pelletier, a hospice nurse who formerly worked in intensive-care units, told the Pioneer Press. “At times, you were doing something unnatural.”

But now, hospitals have entire teams focused on palliative care, and doctors respect that high-quality end-of-life care is sometimes best for terminal patients.

In addition to making patients’ final days more comfortable, hospice care has also been shown to save money by curbing overall health care spending. With health care costs rising at an unsustainable rate, hospice costs only a fraction compared to many alternatives.

For example, intensive care bills from hospitals can cost thousands of dollars per day, while daily Medicare reimbursement for hospice is $180.

Besides death cafes, the international rise of “death doulas” is also emblematic of the death-positive cultural shift. A type of end-of-life care expert, a death doula carries out a dying person’s plan for how and where he or she wants to die, while also providing spiritual guidance and holistic support.

Some hospice companies have even begun to work with professionally licensed doulas as a way to separate themselves from competitors. On a high level, baby boomers are partially to thank to the the shifting perception of death, experts say.

“My particular demographic is a take-charge-of-my-own-life kind of demographic,” Synthia Cathcart, Compassus’ vice president of clinical development and education, previously told Home Health Care News. “We see more and more openness about, when there isn’t another option given, really embracing that stay-at-home, quality-of-life conversation.”

Complete Article HERE!

Simulated end-of-life journey delivers emotional insights

Maine hospice and health care professionals, medical students and even loved ones can broaden empathic responses via virtual reality.

 


 
by

Pull the headset over your eyes and the world around you fades. You have become 66-year-old Clay Crowder, and you are dying.

Your doctor looks into your eyes and quietly explains that medical treatments aren’t working. The lung cancer has spread. You have four to six months left.

Later at home, you doze while listening to your wife and two daughters discuss your care with a hospice worker. As death nears and pain intensifies, you see what’s happening inside your body. Your lungs and rib cage begin to heave rapidly. Medication eases your discomfort. Your breathing returns to a slow rattle.

Family members gather around your bed. You hear them talking. Prompted by a hospice nurse, your wife tells you that it’s all right to let go.

“It’s OK, honey,” she says. “You’ve got your girls here.”

A still from Embodied Labs’ virtual-reality simulation of the death of Clay Crowder, a fictional creation, shows the terminally ill man’s two daughters, left, and his interactions with a hospice nurse.

It’s tough being Clay, a new interactive, virtual reality video that lets the participant go through one man’s end-of-life experience. Hospice of Southern Maine and the University of New England are using the computer simulation lab as a learning tool for health care professionals, medical students, hospice workers and patients’ loved ones.

A box of tissues is always nearby.

“It’s powerful,” said Susan Mason, clinical services manager for Hospice of Southern Maine. “I’ve been a hospice nurse for five years and I was truly shocked at how much I hadn’t considered before I went through the experience as Clay. You truly feel like you’re in it.”

David Carey, chaplain for Hospice of Southern Maine in Scarborough, interacts with a virtual-reality video depicting the final moments of a terminally ill man’s life. Users say the simulation by Embodied Labs is powerful.

Clay Crowder, family man and military veteran, is the creation of Embodied Labs, a Los Angeles-based company that has produced several computer sim labs designed to put people in a patient’s body.

The University of New England in Biddeford has been using the company’s virtual reality technology for nearly two years, to help medical students better understand what it’s like to experience health problems as common as hearing loss and as devastating as Alzheimer’s disease.

Now, Hospice of Southern Maine, based in Scarborough, is using the Clay lab to give staff and family members a better sense of what it’s like to die. Even the most experienced hospice caregivers can find themselves reaching for a tissue and learning something new.

Hospice CEO Daryl Cady said she believes the Clay lab has the power to change the way people feel about death and hospice care, especially for younger generations who are familiar with virtual reality technology.

“It’s so important that people understand how hospice can help at the end of life and not fear it,” Cady said. “If they take just 30 minutes to put on the VR goggles and stand in the shoes of someone with a terminal illness, just think of the change that could make.”

POPULATION AGES, DEMAND GROWS

Cady said the Clay lab also gives hospice staff and volunteers an opportunity to witness the conversations that happen when a physician delivers a terminal diagnosis and the family dynamics that often come into play.

Jaye Van Dussen, community liaison for Hospice of Southern Maine, comforts David Carey after he watched a virtual-reality video depicting the final moments of a terminally ill man’s life.

Such education and outreach is expected to become increasingly important as Maine’s population continues to age and demand for hospice care grows.

Maine’s population is now solidly the oldest in the nation, with the highest median age of 44.7 years – meaning the younger population is dwindling – and tied, with Florida and Montana, for the largest proportion of residents age 65 and older – 19 percent of the state’s 1.3 million people, according to the U.S. Census.

Hospice of Southern Maine’s clinical teams – nurses, social workers and others – visit about 200 patients daily, up from about 130 patients daily just three years ago. Last year, the agency cared for a total of 1,641 patients – either at home or at Gosnell Memorial Hospice House in Scarborough – a 2 percent increase over the previous year, according to the nonprofit’s annual report.

Maine’s use of hospice services has grown steadily in the last decade, Cady said. When Hospice of Southern Maine started operating in 2004, about 9 percent of Medicare-eligible Mainers used hospice services, placing the state at 49th in the nation. By 2013, 57 percent of eligible Mainers were accessing hospice care and the state had moved to 25th in the nation, according to Medicare data.

“The Clay lab will help us educate the community about the end-of-life experience,” Cady said.

BASED ON FAMILY EXPERIENCE

Inside the Clay lab, with the virtual reality goggles over your eyes, you experience the transitions that patients and family members must make throughout the dying process.

When the doctor says you have a few months to live, you turn to your left and see the pained look on your wife’s face. To your right, your feisty daughter presses the doctor to explain why surgery is no longer an option. Your family is adamant. They won’t let you just “fade away.”

Later, you wind up in the emergency room after a serious fall. A compassionate nurse explains some of the benefits of hospice care. Mostly it’s about doing what you’re able to do and keeping you comfortable.

“It comes down to how you want to spend the time you have left,” she says.

Embodied Labs was started in 2016 by four young technology entrepreneurs. CEO Carrie Shaw, a medical illustrator and health educator, was just 19 years old when she helped care for her mother, who had early-onset Alzheimer’s.

That experience prompted Shaw to wonder if putting health care providers in their patients’ skin might make them more effective. Her older sister, Erin Washington, designs the company’s curriculum.

First, the company produced a sim lab experience called Alfred James, a 74-year-old African-American man with advanced macular degeneration and high-frequency hearing loss.

Next, they created Beatriz Rogers, a middle-aged Hispanic woman who progresses through the early, middle and late stages of Alzheimer’s. Clay Crowder is their latest.

LINKS TO UNE, MAINE HOSPICE

All three sim labs are required viewing in the geriatrics education program at UNE’s College of Osteopathic Medicine, one of the few med schools in the nation that require significant training in aging-related health issues.

“Students are always amazed at the experience of becoming Alfred or Beatriz or Clay,” said Marilyn Gugliucci, director of UNE’s geriatrics program. “It’s always interesting to see how they respond to Alfred’s frustration that his doctor is treating him as if he has cognitive impairment when he doesn’t. He just can’t see or hear well.”

Embodied Labs, UNE and Hospice of Southern Maine have developed mutually beneficial relationships, Gugliucci said.

The Clay lab was created after a team from Embodied Labs spent 48 hours at Gosnell House, interviewing staff members and witnessing all that they do, similar to the experience that several UNE med students have each year.

More recently, another team from Embodied Labs spent 48 hours in the dementia unit at the Maine Veterans’ Home in Scarborough, where UNE med students go to learn what it’s like to live in a nursing home, Gugliucci said.

The team’s experience will be woven into the next virtual lab, which will feature a Muslim woman who has Parkinson’s disease and Lewy body dementia, the second most common form of dementia after Alzheimer’s disease.

‘WHAT ACTIVE DYING LOOKS LIKE’

The Clay lab is presented in three segments: terminal diagnosis, decision to start hospice care and death.

“You see what active dying looks like, including what actually happens to the body,” Carrie Shaw said. “Our goal was to make something that’s not scary or grotesque, but it is informational.”

The last segment takes place in Clay’s bedroom.

Again, you are Clay.

Your eyes are nearly closed and your vision limited as family members and caregivers come and go. You hear them talk about your cold feet and your blue hands. Your daughter wonders if you need a feeding tube. The hospice nurse quells her concerns about your declining need for food.

Your death is shown symbolically. An imaginary great blue heron that has visited you before, capturing your fading attention to this world, appears again and flies off from the foot of your bed.

You watch the rest from above as your wife and daughters take turns saying goodbye.

The hospice nurse returns to bathe and dress you in your military uniform. She speaks to you in a gentle, now familiar voice, as if you are still alive.

 

“Mr. Crowder, we’re going to take care of your body now, OK?” she asks.

Your experience as Clay Crowder ends as your casket, draped in an American flag, is wheeled out of the house.

Complete Article HERE!

Doctor seeks to ease fear, anxiety and discomfort surrounding impending death

Dr. Bob Uslander with a patient

By Joe Tash

Dr. Bob Uslander’s No. 1 goal is to provide people who are in the final stage of life with a “soft landing.”

To Uslander, who runs a Del Mar-based medical practice, that means focusing on patients’ dignity, quality of life, and peace of mind as they approach their final days.

A former emergency room doctor, Uslander said he launched his practice – Integrated MD Care – about three years ago after noticing gaps in the health care system, particularly when it comes to caring for elderly patients and those with serious illnesses.

His solution was a model for delivering health care that creates a deep connection between caregivers, patients and their family members. The care team includes a doctor, nurses and therapists, and works with patients in their homes.

While the health care system, including palliative and hospice care, is very compassionate and works to make patients comfortable as their lives end, said Uslander, what’s missing is someone talking to them about their options for their final days, and how they want to experience their end of life.

“No one is talking to them about how they want to die, and what they want that experience to be,” Uslander said. “They miss the opportunity to have a truly empowered, transformational and meaningful end-of-life experience. The conversations aren’t happening.”

Before launching his practice, Uslander said he set out to research end-of-life care and see what was available What he found was a gap in the health care system, which he is trying to fill. He said he is not aware of any other practice like his.

“We’ve proven the model, that it works,” said Uslander, noting that he has seen the results in the improved quality of life for patients and their families.

In 2017, Uslander began caring for Jane Gillenwaters of La Costa, who suffered from pulmonary fibrosis, a condition that left her wracked with coughing spasms, gasping for air.

Jane’s husband of 62 years, Ed Gillenwaters, said the family watched as Jane deteriorated and lived with fear, anxiety and discomfort, knowing there was no cure for her illness.

Uslander took over her care in the final weeks of Jane’s life, and there was an immediate change. Not only did Uslander make changes that left her more physically comfortable, such as finding her a new, more effective machine to dispense oxygen, and taking her off of medications that weren’t helping, but he also talked to her about her end-of-life options and listened to what she had to say.

“His care restored her personal dignity. The more she talked about what she was thinking and feeling the more relaxed she became,” Gillenwaters said. “What he did was set her free from terrible fear and anxiety that is too often associated with impending death.”

The change in Jane’s outlook in turn lifted a “crushing emotional burden” from her husband and children, said Gillenwaters. When she died, Gillenwaters said, she was relaxed and peaceful, and no longer struggling for each breath.

Uslander has assembled a team of nurses, doctors, social workers and therapists, who can offer a range of services depending on the needs and desires of patients. Those services might include massage or music therapy, nutrition assistance or acupuncture.

The practice is considered a concierge service, said Uslander, meaning that doctors and nurses are available by phone on a 24/7 basis.

Patients pay a monthly fee ranging from several hundred to several thousand dollars, depending on their specific needs. The practice does not accept insurance, because Uslander said, “the low reimbursement and onerous administrative burden reduces the ability to provide excellent care.”

Because his practice is privately run, said Uslander, he has the option of reducing or waiving fees where appropriate. He’s also launched a nonprofit, the Integrated Lifecare Foundation, to provide education and raise money to pay for end-of-life care for those who can’t afford it.

Gillenwaters said he was so impressed by the care provided for his wife that he has since joined the foundation’s board of directors.

“Families need to know that such an approach is available to make the ending of loved ones’ lives comfortable and dignified,” Gillenwaters said.

For those interested in learning more about Uslander’s care and treatment model, he is scheduled to give a talk from 6 to 7:30 p.m. on Tuesday, Jan. 8, at the Solana Beach Library, 157 Stevens Ave., Solana Beach. More information can also be found on his website, integratedmdcare.com.

Complete Article HERE!