Category: The Dying Process

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We’re in the middle of a revolution on death

Mary Klein, center, speaks at a news conference in Washington on April 5, 2018, to urge D.C. officials to educate doctors about the city’s “death with dignity” law.

By Jon Meacham

Jon Meacham is the author of “The Soul of America: The Battle for Our Better Angels.”

Tuesday was to be the day — in the morning, because everything was taken care of. The goodbyes had been said, the tears shed, the coffin handmade. In the spring of 2018, Dick Shannon, a former Silicon Valley engineer with untreatable cancer, took advantage of California’s “death with dignity” law to end his own life once all other medical possibilities had been exhausted.

“My observation about the way people die, at least in America, is they . . . are not allowed the opportunity to be part of the process,” Shannon explained. “For my way of thinking, the part that bothers me just immensely is not being allowed to be part of that process. It’s my death. Go with what you believe, but don’t tell me what I have to do.” Discussing the ultimate decision with his doctor, Shannon remarked, “It’s hard to fathom. I go to sleep and that’s the end of it. I’ll never know anything different.” He paused, then said simply: “Okay.”

When the day came, Shannon was ready. The end-of-life medical cocktail was mixed in a silver stainless steel cup, and he drank it in front of his loving and tearful family. “I’ve accepted the fact that I’m dying,” he’d said earlier. “There’s nothing I can do to stop it. Planning the final days of my life gives me a sense of participation and satisfaction.” As he prepared to slip away, he told his family, “Just know that I love you — each and every one of you.”

America is becoming ever more like itself when it comes to death. From Walden Pond to Huck Finn’s lighting out for the territory, we’re a nation of individualists, shaped and suffused by self-reliance and a stubborn allegiance to the live-free-or-die motto of the Revolutionary era. With this twist: Baby boomers and their successor generations are insisting on being free to take control of death itself. Innovation, creativity and customization — the hallmarks of our time, an age in which we can run much of our lives from our mobile phones — are now transforming both how we die and the mechanics of remembrance that come afterward.

The coming revolution in death — and Dick Shannon’s story — is laid out with uncommon wisdom in a powerful, new HBO documentary, “Alternate Endings,” which debuts Aug. 14. Only eight states and the District of Columbia have death-with-dignity laws, but three of those states — Hawaii, Maine and New Jersey — have put their statutes on the books within the past year. And 18 other states considered such laws in the 2019 legislative season.

The movement has not attracted the same attention it once did; in the 1990s, Jack “Dr. Death” Kevorkian, the right-to-die advocate, drew considerable public alarm. As the documentary by Perri Peltz and Matthew O’Neill makes clear, the conversation has entered a new and compelling phase now that Americans are thinking about death as something as disintermediated as commuting, dating and shopping.

The United States has a long history of rethinking the rituals of death. Embalming became part of the popular understanding and tradition of death during the Civil War; the task then was to preserve the bodies of dead soldiers so their families could see them one final time. Abraham Lincoln may have done the most to raise the profile of embalming when he chose first to embalm his 11-year-old son and then when his own corpse was embalmed for the long train ride home to Springfield, Ill., after his assassination.

Now the death industry in the United States has evolved with the culture. For many, corporate consolidation has reshaped a funeral home industry, which was once made up almost entirely of local, family-owned companies. (And which, as Jessica Mitford wrote in her 1963 book “The American Way of Death,” unctuously gouged grieving families.) The Internet has disrupted the casket industry with Walmart and others selling directly to families. As “Alternate Endings” reports, there are now green burials (including using a loved one’s ashes to help restore coral reefs), space burials and even drive-through, open-casket viewings.

Once the great gatekeeper of life and death, organized religion, too, is losing its sway. In an era in which friends routinely ordain themselves on the Internet to preside at weddings, the rising numbers of Americans who are “unaffiliated” with any particular faith mean that institutions that once gave shape to life and meaning to death are being gradually supplanted family to family.

The issues raised by Dick Shannon’s story are the most profound. Many religious authorities — notably the Roman Catholic Church — oppose euthanasia (Greek for a “good death”). Such teachings face a generational head wind as more people (and states) move from deferring to institutions to simply making their own decisions. The questions involved are intricate and complex and painful — but it is plain to see that we are witnessing another rite of passage undergoing an irrevocable disruption.

When the Shannons held a “living wake” for friends to say goodbye to Dick, the family hung a banner on the wall: “Life is what you celebrate. All of it. Even its end.” Before passing, Shannon said, “I want it to be on my terms.” Given that death comes for us all, so, too, will many of us have to confront the agonizing decision that he faced with grace.

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What’s healthy dying?

6 steps on the path for doctors to know

By Timothy M. Smith

Most Americans die in hospitals, but acute care settings are by default focused on saving lives and therefore struggle to deal with death as something other than the unfortunate outcome of having no interventions left to try. An expert in end-of-life care notes that death is an essential part of life for patients and their families and suggests several steps physicians can take to make death a “healthy” experience.

For starters, Chapple said, one should acknowledge that the aim of acute care settings is to rescue patients, to avoid death at all costs.

“If there is an intervention to try, that’s what we’re going to do,” Chapple said, noting that this urge is reinforced by health care payment mechanisms, as well as by family members’ anguish. “So, it’s very difficult to move in a different direction. It’s like a train that you can’t jump off of.”

Trying everything, however, can undermine our cultural and clinical capacity to acknowledge the importance of dying, Chapple said. She suggested taking the following steps to reinforce the concept of dying in a healthy way.

Focus on patient safety and autonomy. “I worry that patients are overmedicated or undermedicated, that we’re not reacting to what’s really happening to the patient,” Chapple said. “Healthy dying is when patients themselves get to choose the agenda and get to take their own time—as long as they’re not suffering at all, or they appear not to be suffering—and we all just take their timetable and let it happen.”

Acknowledge death as a part of life. This begins with making the most of what Chapple called the “critical present” by suggesting that family members take time to reflect on the patient’s life. “It’s sort of antithetical to the way acute care is set up, which is doing all the time, rather than being, rather than existing and noticing the existential significance of where we are right at this moment,” she said.

Reset loved ones’ expectations. In critical care, Chapple often tells families, “This person has never died before, and this is our chance to make it the best dying they can possibly have.” She suggested preparing family members for what might happen logistically, such as transferring the patient to a step-down unit, and noting that the active dying phase can last several days.

Encourage family members to talk to patients. Hearing is thought to be one of the last senses to go in dying patients, so it may help to share memories. “Families may not talk to each other because they think the family knows all the stories,” she said, so members of the care team can help initiate this by asking about significant events in the patient’s life.

Note the importance of religious rituals. Ceremonies, prayers and songs can help make this time meaningful too.

Suggest loved ones say goodbye in their own ways. Let family members know the following, Chapple suggested: “If you want to … say to the person something that you’ve always wanted to say and never had the opportunity or you certainly want them to know before they die, this is the time to do that.”

Complete Article ↪HERE↩!

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Hospice Physician B.J. Miller: ‘Life is Not a Fight Against Death’

As executive director of San Francisco’s Zen Hospice Project, BJ Miller has helped pioneer the field of palliative care.

By Jim Parker

Hospice and palliative care physician Bruce (B.J.) Miller has made it his mission to help people “live well in the face of death.”

A hospice and palliative care physician at the University of California Helen Diller Family Comprehensive Cancer Center and former executive director of the Zen Hospice Project, Miller speaks nationally about end-of-life care, including the benefits of hospice and palliative care, and was featured in the Netflix documentary short film, End Game.

His new book, A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death, co-authored with journalist Shoshana Berger, is designed to educate the public about the options and obstacles that patients and families encounter at the end of life.

Miller’s has experienced palliative medicine both as a clinician and as a patient. An accident during his college years resulted in the amputation of one arm below the elbow and both legs below the knees.

“Part of the reason that I wound up becoming a doctor is that I came close to death in my own life, earlier than expected and in a dramatic enough way that I had little choice but to sit up and take notice,” Miller wrote in the book.

Miller spoke with Hospice News about perceptions of death in our society and its influence on patients’ choices, including hospice election, how patients should be cared for at the end of life, as well as the policy, practical and financial considerations that can impact that care.

“Hospice is a business too, and is affected by the same mundane staffing issues as any other: Illness, vacations, car trouble. The difference here is that a long wait for a bad latte will never be comparable to a late nursing visit when you are in desperate need for help,” Miller and Berger wrote in the book. “The hospice system is a part of our stressed health care system and that means it is stressed too. Burnout and turnover are significant problems across the industry; meanwhile, training programs struggle to impart the sort of knowledge and grizzled experience that good patient care requires.”

Regarding your book, A Beginner’s Guide to the End, what factors led you to decide that a resource like this was needed?

Being a clinician working in the hospice and palliative care space, I see patient after patient and family after family languish and suffer due to lack of information. This is certainly true anywhere in health care, but especially in our field because our explicit mission is to ease suffering. And this has proven very tricky. Most people don’t know what palliative care is. Many people know what hospice is, but they have so many misunderstandings of it.

I felt there was a need to get a general book out there to cover the waterfront, the hope being that essentially that we could raise the floor. We are not going to blow off the ceiling, but at least we can raise the floor and level the playing field so most everybody has some access to sound, up-to-date information. That was the impulse.

At several points in the book it’s mentioned that there is a kind of taboo around the topic of death. How do you think that influences people’s choices at the end of life, including electing hospice?

Our language gives us away. We have this old-fashioned notion that life is a fight against death, as though death were a foreign invader instead of a natural thing that is completely entwined with life.

We talk about death as a failure. In medicine we say, “He failed treatment.” That they “lost the battle,” and so forth. So we find all these exotic ways to keep the subject at a distance, and in daily life it has become easier and easier to become distracted from this. And it means that so many people wait way too long to elect hospice. And if they do enter hospice at all, it’s often in the final days where there is not much time to do all that we can to bring life to a close and provide some comfort.

Even beyond the election of hospice I think if we built awareness of our mortality into our daily lives, my guess is that we’d be much kinder to ourselves and to each other and much more appreciative of the life we have while we have it.

How do you see the hospice and palliative landscape changing? How you think the space could be different five years from now?

My hope would be that medical training in general absorbs the principles of hospice and palliative medicine and drives this kind of care earlier into the picture. Just about any clinician of any stripe should have some kind of basic facility with these concepts — eventually 100% of their patients are going to die.

My hope is that our workforce grows to meet the rising demand, and that payment gets worked out so people are incentivized to pursue careers in this important field. From a policy standpoint, hopefully there will be some legislation passed promoting training for hospice and palliative care.

I do think we in the field also really have to take quality seriously. We used to be able to just absorb the idea — it was just a fact that hospice in particular provided superior quality care as a medical model — and that’s still largely true. But we have to be careful, it’s not just about getting more people into the field; we have to keep our eyes on quality.

Do you think that current payment models for hospice, in particular the Medicare Hospice Benefit, are copacetic with the mission of providing multidisciplinary person-centered care in accordance with patients’ goals and wishes for end of life?

I think in general the hospice benefit does a very good job. I think its sticking points are the requirement that patients have six months or less to live and the idea of all the things that you can’t do while you are on hospice.

Those things made sense in 1982, but they don’t make much sense anymore. For example there are a ton of treatments that might be considered life extending that are actually palliative in nature. I see a lot of patients who are fully aware of all these trade offs and forestall their hospice election because they want access to certain treatments that could maybe help them live longer but also could make them feel better.

So those two sticking points are ripe to be revisited. Otherwise I think the hospice benefit is very sound, but I wonder how much longer the hospice benefit will look like the hospice benefit of today.

How do you feel about a possible Medicare Advantage carve-in for hospice?

I am not a policy expert, and there may be some counter arguments. but I wonder what the unintended consequences of that would be.

Right now Medicare sets the guidelines, and therefore there is a centralized power and policy hub. In sending the hospice benefit to private companies, will Medicare Advantage plans be allowed to dictate their own hospice benefit? If so, I have to imagine quality would go down due to cost-cutting measures which ultimately would also be quality-cutting measures.

You have spoken about how the health care system has diseases rather than people at its center. Do you think that is starting to change and how can the health care community accelerate that change?

I believe it’s starting to change in that the phrase “patient-centered care” is pretty well known and recognized, and I don’t hear anyone arguing against patient-centered care. So I think there’s an opening dialogue around it.

But I also watch some of my medical colleagues roll their eyes at it, and for good reason: Our population, health, and disease and treatments are so complex that it’s practically impossible for patients to make an informed decision, because we haven’t done a very good job of educating them. So it’s unrealistic to say that we can do whatever the patient wants.

What it is realistic is a shared decision-making model in which your clinician is your advocate and together you are working on a plan that’s realistic for the options in front of you, and together you make decisions. I think that’s the golden chalice we are trying to find.

A good example is that if you were to follow patient satisfaction surveys — if those were the gold standard of a patient-centered system — data show that patients prefer doctors who prescribe more medications because that feels like their doctor cares, but more medications is not always the best clinical choice.

That’s a case in point where it’s much more complicated than the satisfaction of the patient or the family, so I think the refinement here is to elevate the patient’s voice in the decision-making process and do the listening on our side as clinicians and encourage patients to speak up for what’s important to them, and together move forward. That is how things should work.

One of the most pervasive barriers to bringing patients into palliative care and hospice is awareness. Most people simply don’t know what these things are. What can hospice and palliative care providers do to move the needle on that issue?

No one seems to understand the difference between hospice and palliative care, and I wonder what policy could come along to help smooth out these false divides. I keep waiting for someone to organize a kind of mass public service announcement, explaining to the public what the solutions are and explaining the field.

As a clinician I am explaining the distinctions to people all the time, and I struggle to do it in a succinct manner; so I think that you need some real communications expertise. It’s a very tricky and complicated communications challenge to distinguish between these concepts in a way that is understandable and relatable, especially when for a lot of people it’s inborn to want to look away.

I would love to see some sort of mass public communication effort. That would go very far even among the health care community. Many of my doctor and nurse colleagues themselves couldn’t tell you the difference between hospice and palliative care. That is very common, so we have a massive communications problem that will take a multimillion dollar effort to get past.

You have spoken about the need to bring intention and creativity into dying. Where does hospice fit into that?

Dying is way bigger than a medical event. Hospice begins with a conversation about what is important to the patient and what is not important to them, and just the nature of that conversation helps people to live with intention.

You help and encourage them to think through what is important, what can they live with, what can they live with, coming to terms with the finitude of their time, and then you can work from there and to some level design your days. Hospice facilitates those conversations all the time.

I think the creative spark is a way of life, a way of thinking in which daily life is a creative act, including at the end of life. We are all improvising all the time, bobbing and weaving, checking our plans versus the reality on the ground. Creativity often flows from reaction to limitations, and this is our limitation: We don’t have endless time.

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Struggling to die in peace:

A family fights to turn off a pacemaker

In 2010, the American Heart Association, American College of Cardiology, the American Geriatrics Society and other prominent groups issued a statement indicating that the deactivation of a pacemaker, an implantable device used to speed up slow heart beats, is ethically permissible.

By Jennifer Friedlin

For the past month, my mother and I have been advocating for the deactivation of my father’s pacemaker. Yet despite my parents having taken every measure to ensure that they would control the ends of their lives, two months since a severe stroke destroyed whatever quality of life my father, who was already suffering from advanced dementia, had left, his heart continues to beat against my family’s wishes.

In 2010, the American Heart Association, American College of Cardiology, the American Geriatrics Society and other prominent groups issued a statement indicating that the deactivation of a pacemaker, an implantable device used to speed up slow heart beats, is ethically permissible. Reaffirmed last year, the statement says, “Legally, carrying out a request to withdraw life-sustaining treatment is neither physician-assisted suicide nor euthanasia.”

Nevertheless, the team of medical professionals at Parker Jewish Institute for Health Care and Rehabilitation has given us the runaround. Most recently, my mother and I met with my father’s team of medical professionals to discuss moving my father into hospice as well as deactivating the pacemaker so that my father could live out his days naturally. During the course of the meeting, my mother, who is my father’s proxy, made clear that this would be my father’s wish.

According to the law, the request is my mother’s prerogative. In 1990, in Cruzan vs. Director, Missouri Department of Health, the Supreme Court ruled that a competent patient could refuse life-sustaining treatments, including nutrition and hydration. This case gave rise to advance directives so that a proxy could carry out the patient’s will. In a later case, the Court affirmed the right of competent patients to refuse therapy.

The medical team agreed to hospice, but has so far refused to carry out the request to deactivate the pacemaker. We have had several long conversations with the medical team, and, while they seem to agree with our desire to give my father a dignified end, they offer confusing explanations as to why they will not carry out my dad’s wishes.

At one point, a staff member told me that because a pacemaker does not prolong life, we should leave it. But my father’s pacemaker is working 53% of the time to correct his condition, known as bradycardia, which can result in heart failure. I fail to see how this device is not prolonging my father’s life or, at the very least, interrupting the possibility for his natural demise.

We are certainly not the first family to confront the medical community’s refusal to deactivate a pacemaker. Katy Butler, author of “The Art of Dying Well,” has written extensively about her efforts to give her father the death he wanted by deactivating his pacemaker. Butler also uncovered other horrors, such as cardiologists recommending pacemakers for elderly people with advanced dementia.

Much of the motivation, Butler noted, seemed to stem from the financial rewards of treating people, even the terminally ill. Simply put there’s no money in death. And yet in its current design, at $450 a day for room and board alone, institutions like the Parker Institute rake in millions annually from people whose lives are being maintained artificially. The medical system could quite literally bankrupt healthy family members to keep a dying one alive.

Although estimates vary, each year approximately 400,000 people — half over age 75 — get implantable cardiac devices, including pacemakers. Primary care doctors, cardiologists, and elder care attorneys should inform people about how these devices can affect their end of life and encourage them to include their wishes in advance directives.

Yet, even if they do, they may hit the same wall of refusal my family has faced. It seems that despite the legal rulings and the ethicists’ writings, doctors are committed to keeping pacemakers ticking.

It’s unfair to the terminally ill and their families that this view prevails. The refusal to deactivate means the sick family member is denied a dignified death, while the need for constant advocacy leaves family members feeling like they are making an unseemly demand.

As the debate about healthcare builds in the run up to the 2020 presidential election, I hope that the candidates will discuss reforms to improve end of life care. There should be dignity in death for the terminally ill and no healthy person should be forced into bankruptcy to keep a loved one alive against his or her will. There are certain people we should spare no expense to keep alive, in our family’s opinion my father is not one of them.

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What People Actually Say Before They Die

Insights into the little-studied realm of last words.

By Michael Erard

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 the dying. 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 the dying. 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 the dying, there’s next to nothing to look up, only firsthand knowledge gained painfully.

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 the dying, and to the dying 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 the dying. 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 the dying 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.

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‘End Game’ Film Shows the Struggle in End-of-Life Decisions

The Oscar-nominated documentary also spotlights palliative and hospice care

By Deborah Quilter

In a pivotal scene of the documentary End Game, we listen in as a team of palliative care professionals discusses Mitra, a 45-year-old woman who is dying of cancer. Should they approach her about hospice? The hospital chaplain urges the group not to bring it up. She had spoken to Mitra’s mother, who told the chaplain that to Mitra, hospice means death. Dr. Steven Pantilat, a palliative care specialist, agrees with her assessment, noting: “Healthy people want to talk about how they want to die. Sick people want to live.”

This exchange in End Game (available on Netflix) captures human nature, and the delicate dilemma doctors and patients face at the end of life, under the best circumstances. Filmed in the serene hospital rooms and corridors of the University of California San Francisco Medical Center and the recently-closed Zen Hospice Project, situated in a tastefully-appointed Victorian house, we see firsthand the inner workings of hospice and palliative care.

We also see clearly how important it is to talk about these matters before we might need them.

Considering Palliative and Hospice Care

Though palliative and hospice care can greatly ease suffering, they are not easy to talk about or decide on for many patients. Some of the people in the 40-minute documentary are not ready to check out and seem to feel that accepting hospice care would mean accepting death. Their family members don’t want to let them go either.

Mitra’s husband hopes each new treatment will bring a miraculous recovery. Her mother knows her daughter will never walk again, much less recover from cancer and thinks her daughter is suffering. In one scene early in the movie, which is doubtless replicated in many hospital rooms every day, Pantilat asks Mitra’s husband and mother if they want to continue treating the cancer.

“If she were clear in her thinking and seeing herself in her bed the way she is right now, what decision would she make?” Pantilat asks. The question hovers in the air.

When Mitra’s sister flies in from Switzerland, initially there is jubilation over the reunion and we rejoice vicariously with the family. In the next scene, however, we see the sister collapsing in her mother’s arms in the hallway, weeping. Later, we see Mitra’s mother literally staggering down the hallway under the weight of her sorrow. We witness Mitra’s husband’s heart breaking, and their 8-year-old son playfully massaging his mother’s bald head.

There is joy, sorrow, love. The camera captures it all, but there is no narration. We witness the family’s struggles as they go through them in real time. This is part of the film’s power: It is easy to identify with the subjects. Viewers might feel they are losing their own family member.

The Filmmakers’ Vision: Bring Death Out of the Closet

The 40-minute film, directed by Rob Epstein and Jeffrey Friedman, was nominated for an Oscar in the category of Documentary Shorts.

The filmmakers, who won an Oscar in 1985 forThe Times of Harvey Milk, wanted to raise awareness about how palliative and hospice care can give us the right care at the right time. As Friedman explained, birth and death are universal life passages, and of those, death is the one we have the option of facing consciously.

“Most of us avoid thinking about it until it’s too late. By doing that, we set ourselves up to lose control of our life story when we’re at our most vulnerable,” Friedman says. “Couple that with medical technology so advanced that we can keep nearly everyone ‘alive’ using machines — but without taking the time to talk about what the quality of that life will be. The result is that far too many people are getting care they don’t understand and don’t want.”

“End Game is about choices we make about how we want to live, when we know our time remaining will be brief,” Epstein adds. “One of our goals in End Game was to inspire conversations — not only about facing death, but about how we want to live, right up to the end.”

End-of-Life Care Explained

According to Pantilat, author of Life after the Diagnosis: Expert Advice on Living Well with Serious Illness for Patients and Caregivers, “Palliative care focuses on improving the quality of life for people with serious illness (whatever the prognosis). It alleviates symptoms like pain, shortness of breath, fatigue and nausea. It’s also about having patients communicate preferences and values, so the care team can attend to their psychological, spiritual and emotional support when they are sick.”

In the United States, hospice is a service to provide palliative care to people, largely at home. For hospice, the eligibility criteria include a prognosis of no more than six months of life and patients and loved ones who have agreed the focus will be comfort care.  Hospitalization, generally, will be avoided.

“Most of the time, hospice is not a place, but a service, although there are facilities focused only on hospice care (as Zen Hospice Project was). All hospice is palliative care, but not all palliative care is hospice,” Pantilat explains.

Many people have the misconception that once you choose palliative care, you’re not getting any other treatment for your illness. “That’s not true at all,” Pantilat says. You could have palliative care alongside chemotherapy, bone marrow transplant and many other serious illnesses. In fact, palliative care might help you live longer.

“There’s never been a study that showed that people who receive palliative care live less long. And there are studies that show that people who receive [palliative care] for the illness live longer. It’s an unmitigated good.” Pantilat says.

Help for the Family, Too

There’s another important feature of palliative care: It also attends to a dying person’s loved ones. The palliative care team will talk to family members and offer them comfort, options and counsel.

Pantilat notes: “When people ask, ‘When should my family come?’ I always say come now. If they get better and live for another six months or year or two, no harm, no foul. It’s one more visit. But if you try to time it when they’re really sick and on death’s door, they might be too sick to have a meaningful interaction or you might miss the opportunity. Things can happen suddenly.

“We try to have these conversations in advance and understand what’s really important,” Pantilat continues. “If visiting with your sister or seeing your daughter get married is the most important thing to you, now’s the time to do it. Maybe you shouldn’t wait 10 months for a wedding, because you may not make it. Instead, could your daughter move the wedding up to next month?”

And speaking of not waiting, the doctor has a message: “If you or a loved one has a serious illness, you should have palliative care. Don’t take no for an answer. Because it will help you live better and may even help you live longer.”

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The myth of ‘no place like home’ when it comes to end of life

In a new study, MU researchers uncovered several themes that expose the challenges that are often not included in conversations about dying at home.

by University of Missouri-Columbia

She died at home, but it wasn’t the romantic scene found in movies, where the family held her hand and she simply closed her eyes. In reality, there was a night when she had diarrhea 12 times. In reality, every time she had to be moved she was in pain. This was how a caregiver described caring for her mother as she died at home to social scientists studying end-of-life decision-making.

In a new study, Jacquelyn Benson, assistant professor of human development and family science at the University of Missouri, found that home deaths can be physically and emotionally challenging, especially for caregivers.

“The realities of a home death experience present challenges for family members, especially those with limited resources and social support,” Benson said. “It is important that people understand that home death does not automatically equate a good death.”

In recent decades, there has been a groundswell of social movements championing the ideal of dying at home. According to the Centers for Disease Control and Prevention, home deaths in the U.S. increased nearly 30 percent from 2000 to 2014, while deaths in hospitals, nursing homes and long-term care communities dropped.

To study how home deaths might impact caregivers, Benson along with fellow MU researchers Benyamin Schwarz, Ruth Brent Tofle and Debra Parker Oliver, captured stories from caregivers to identify common themes surrounding the experiences of home deaths. Through the in-depth interviews, the researchers uncovered several themes that exposed the challenges that are often not included in conversations about dying at home. In some cases, challenges arose because there was uncertainty for the decision maker, and some caregivers were not prepared for making decisions regarding the end of a loved one’s life.

The researchers also found that financial resources and strong relationships can help in differentiating good deaths from bad ones. Researchers found that the “good” death experiences involved high levels of emotional support for the dying individuals and the caregivers, and that the place of death played less of a role.

“A few well-known sayings about home are relevant to our findings,” Benson said. “For instance, many people believe there is ‘no place like home,’ which suggests the physical space we call home is paramount when it comes to our comfort. However, another saying, ‘home is where the heart is’ suggests that the essence of home can be replicated in less familiar spaces. When making end-of-life decisions it is important to remember that death can be quite gruesome and that it might be easier on both the dying individual and the caregiver to make a plan that carries the concept of ‘home’ to wherever they might be.”

“The motivations and consequences of dying at home: family perspectives,” was published in a special issue of the Journal of Housing for the Elderly on Environments of Dying, Death, and Caregiving at End-of-Life. Benson served as guest editor for this special issue.