Use these titles to help you better explain difficult topics such as death, illness, and grief to your child.
By Christie Burnett
This is the book list parents hope they will never need, but it’s an important one nonetheless. These books are valuable resources for talking to children about love, illness, death, and the stages of grief — all of which are abstract concepts that can be difficult for children, especially young ones, to grasp.
The seven titles on this list can also offer support and comfort to children experiencing the overwhelming emotions of losing someone in their own life.
1. In his signature simple style, Todd Parr explores the range of emotions and responses when we experience loss in The Goodbye Book. Parr guides young readers through the feelings most commonly felt when struggling with a goodbye, with the reassurance that with time things will get better, and a reminder that they are always loved.
2. Wherever You Are My Love Will Find You by Nancy Tillman is a beautiful, heartfelt exploration of the unconditional love that a parent has for a child, even when they cannot be together. While death is not explicitly mentioned, this book is a lovely resource for offering reassurance to children who have experienced the loss of a parent.
3. I’ll Always Love You by Hans Wilhelm explores the love between humans and their pets through the story shared by a young narrator about his dog, Elfie, and their life together. The book shows the boy caring for Elfie as she ages and his family’s grief when she dies of old age. The boy is sad that Elfie is gone but consoles himself that his dog always knew how much she was loved.
4. The Invisible String by Patrice Karst is a comforting story about two siblings who learn that everyone has an invisible string connecting them to everyone they love — anywhere, anytime — through separation, anger, and even death. “Even though you can’t see it with your eyes, you can feel it deep in your heart, and know that you are always connected to the ones you love.”
5. Nana Upstairs & Nana Downstairs by Tomie dePaola shares a tender story of love and care for an elderly relative through the eyes of a young boy named Tommy. We see Tommy helping his grandmother care for his 94-year-old great-grandmother, and the close bond he shares with both women. When his great-grandmother (and later his grandmother) dies, the story shows Tommy’s reactions to the deaths of these beloved family members.
6. Ida, Always by Caron Levis shares the beautiful story of two city zoo polar bears, Gus and Ida, and their feelings when Ida becomes sick with an illness that cannot be healed and later dies. It beautifully explores the turbulent range of emotions felt when a loved one becomes terminally ill, with a focus on making the most of the time we have left with sick loved ones. This is one of the most poignant books about love and loss I have read.
7. I Miss You: A First Look at Death by Pat Thomas explains what we know about death and grief in a simple, factual manner. It outlines reasons why people die, introduces what a funeral is, and explores the difficult feelings and emotions of saying goodbye and missing someone very much.
I am such a huge fan of using books to open or continue discussion with kids about difficult topics. Given how overwhelming and confusing the experience of death can be for a child, each of these thoughtfully composed books deserves a place on our home bookshelves.
BONUS: Longfellow And The Deep Hidden Woods. Longfellow, the bravest and noblest wiener dog in the world.
As our story begins, Longfellow is a puppy learning how to be a good friend to his human companions, old Henry and Henry’s nurse Miss O’weeza Tuffy. By the end, Longfellow has grown old himself, but he is still ready for one final adventure.
What happens in between is an unforgettable and heartwarming tale that throws a tender light on the difficult truths of loss and longing as well as on our greatest hopes.
Two brothers are combining palliative care expertise, linguistics and AI to encourage more effective conversations between doctors and people receiving end-of-life care.
Hospitals track infection rates, bed occupancy and many other measures. Why not good conversations, too?
One afternoon in the summer of 2018, Bob Gramling dropped by the small suite that serves as his lab in the basement of the University of Vermont’s medical school. There, in a grey lounge chair, an undergrad research assistant named Brigitte Durieux was doing her summer job, earphones plugged into a laptop. Everything normal, thought Bob.
Then he saw her tears.
Bob doesn’t baulk at tears. As a palliative care doctor, he has been at thousands of bedsides and had thousands of conversations, often wrenchingly difficult ones, about dying. But in 2007, when his father was dying of Alzheimer’s, Bob was struck by his own sensitivity to every word choice of the doctors and nurses, even though he was medically trained.
“If we [doctors] are feeling that vulnerable, and we theoretically have access to all the information we would want, it was a reminder to me of how vulnerable people without those types of resources are,” he says.
He began to do research into how dying patients, family members and doctors talk in these moments about the end of treatment, pain management and imminent death. Six years later, he received over $1 million from the American Cancer Society to undertake what became the most extensive study of palliative care conversations in the US.
The resulting database contains over 12,000 minutes and 1.2 million words of conversation involving 231 patients. This is the basis of the Vermont Conversation Lab, which Bob created to analyse this data and find features of those conversations that make patients and family members feel heard and understood.
Brigitte’s job in the lab that summer was simple: listen to moments of silence and categorise them. The idea was that they could indicate emotionally charged connections between doctor and patient. Once the silences were coded, they would be used to train a machine-learning algorithm to detect them automatically – and, with them, moments of emotional connection.
You might ask what place algorithms could possibly have in this sensitive realm. The reality is that healthcare communication needs help, especially in palliative care, where practitioners seek to bring patients to their deaths as meaningfully and painlessly as possible.
In 2014, the US Institute of Medicine made improving doctor-patient communication a priority in its landmark study, ‘Dying in America’. An analogous publication in the UK, Ambitions for Palliative and End of Life Care, emphasised the need for patients, family and caregivers to have “the opportunity for honest, sensitive and well-informed conversations about dying, death and bereavement”. It reiterated that doctors need to make those conversations possible.
Most of the resulting communications training seems to offer scripts and templates to help doctors deliver bad news and make decisions with patients. But this is not enough. In this context, doctors really need to understand conversations more broadly. They need to appreciate everyone’s role in a conversation. They need to learn the ability to listen and be silent. They need to confidently recover from conversational missteps.
“Oncologists are in general very uncomfortable with this kind of thing. They want to focus on treatment, and they talk eloquently about different protocols and clinical trials,” says Wen-Ying Sylvia Chou, a programme director in the Behavioral Research Program at the US National Cancer Institute. She oversees funding on patient-doctor communication at the end of life. “But sitting in the place of being a listener is not something that clinicians are trained for or necessarily comfortable doing.”
End-of-life medical conversations also often involve language in extremis.
Enter Bob Gramling. Hospitals track infection rates, bed occupancy and many other measures. Why not good conversations, too?
Amiable and serene, wearing a bracelet of Buddhist meditation beads, Bob sees a big role for artificial intelligence (AI) that can detect and measure the features of clinical interactions that matter to patients, then report those measurements to numbers-oriented healthcare systems.
Once such technology is widely available, he says, “we can incentivise our hospitals to build systems to improve those interactions and reward doctors for doing it”.
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“How are you?” asks the nurse practitioner, who’s just come into the patient’s room.
“Fine,” the patient says. She’s a 55-year-old white woman with stage 4 breast cancer. Neither she nor the nurse practitioner know that she’ll be dead in five days.
“No, you’re not,” the nurse practitioner retorts.
“Oh, a loaded question,” the patient laughs.
“It’s been a long – well? No,” says her spouse.
“No,” says the patient. “It’s a polite question, it’s a polite answer.”
This is a snippet of a conversation in Bob’s database that he played to his brother David, a linguistics professor at the University of Arizona. David recognised the dynamics of this specific moment. The people in that room hadn’t been talking about care or disease, but they had been doing something important in the conversation that would affect the quality of the care.
When the Gramlings’ father died, David flew home from a literature studies fellowship in Berlin. But years earlier, he’d been intimately involved as a caregiver, witnessing a “smörgåsbord of insane, irrational communication failures” with lawyers, nurses, nutritionists and priests.
For a year after their father’s death, the brothers were swallowed by family matters. As they emerged, they began talking about palliative care communication and linguistic research in healthcare settings, and began to collaborate professionally.
The most recent result is a book, Palliative Care Conversations, published in early 2019. It aims to show physicians how conversations work, such as how clinicians and patients often understand words and phrases differently. David looked at the conversations at a granular level, using the tools of a linguistic subfield called conversation analysis. He spent years listening to audio recordings of the conversations, noting moments worth closer analysis.
Meanwhile, Bob provided clinical details about medical culture. In the last few years, he has also hung out with jazz musicians, who are master communicators when they’re improvising, and visited the Stanford Literary Lab to see how digital tools can be applied to massive literary corpuses to understand patterns too diffuse for human readers to catch.
Research on end-of-life communicating and decision-making typically looks at what doctors or nurses say. It rarely takes into account the deeper linguistic and cognitive factors that influence patients’ abilities to communicate in the first place.
As the Gramlings note in the book, the above back-and-forth between patient, spouse and nurse practitioner is remarkable for a first exchange between strangers. They explain that’s because “the clinician is willing to risk conventional rapport-building pathways by contradicting the family member’s self-reported state of mind”. In other words, the physician has opened the door to a looser mode of relating – and it works.
Another conversation doesn’t go as well. It’s a “pragmatic failure”, as David would say.
“When I came in,” says the nurse practitioner, “I saw you were watching Scrubs.”
“Scrubs?” the patient says. He’s a 63-year-old black man with stage 4 kidney cancer, who will live for 135 more days.
“Have you ever seen Scrubs?” asks the nurse practitioner, who is white.
“Yeah,” the patient says. “No, I wasn’t watching Scrubs.”
As the exchange unfurls, it’s clear the patient and clinician won’t connect. The clinician then seems to want to force their way to the task at hand, and forget the small talk where rapport could be built.
“When you study communication in healthcare, you’ll see a lot of monologues from doctors,” Bob says. “I don’t mean that in an insulting way – it could be really good information.” In palliative care, he explains, conversations are different: “It might be just because it’s the nature of palliative care. It’s what we do and what our value is… there is a lot of turn-taking.” That’s another term he learned from his brother. It refers to the back-and-forth of conversation.
“This is not a clean, rational, logical experience that fits on an 8-and-a-half-by-11 piece of paper, it’s a human-engaged relational endeavour,” he adds. “If we’re going to develop metrics for that, we’d better be looking at both the beauty and the science from many angles.”
Research on end-of-life communicating and decision-making typically looks at what doctors or nurses say. It rarely takes into account the deeper linguistic and cognitive factors that influence patients’ abilities to communicate in the first place.
One study, by speech-language pathologists in the late 1990s, showed just how large these language challenges can be. They gave a battery of language comprehension and memory tests to 12 hospice patients: 11 of them couldn’t recall words, had difficulty understanding things and pronouncing words, and had difficulty remembering what was said to them. These symptoms get in the way of normal activities, like having conversations.
Even something as crucial as how well older patients can hear gets overlooked. In a 2016 survey of 510 hospice and palliative care providers across the US, 87% of them said they did not screen for hearing loss, even though 91% of them agreed that patients’ hearing loss impedes conversation and negatively affects the quality of the care they receive. Only 61% said they felt confident nonetheless that they could deal with patients with hearing problems.
The Gramlings pay a remarkable amount of attention to another factor: the pain, shortness of breath, fatigue and medications that can keep patients from communicating normally.
In his research, David has addressed what he calls “language in extremis”: what happens when people’s ideas about language and communication buckle under the strain of circumstances, as in multilingual experiences in Nazi concentration camps, or interpreting in border patrol detention facilities.
End-of-life medical conversations also often involve language in extremis. As cancer brings a person’s life near to its end, they may have lost some of their lifelong communicative powers to the disease or its treatments. They may have less ability to speak subtly and indirectly, which is important for politeness. Shallow breathing shortens utterances, and drugs may block word-finding. All of this reinforces an asymmetry in communication that doctors don’t always grasp.
At the end of a patient’s life, there may not be effective medical treatments, just things to discuss and plans to make.
A physician might encourage a patient to speak openly, and indicate their willingness to listen, but in practical terms, “That gesture doesn’t quite work,” David says, and doctors need to understand why.
At the same time, people still hew to lifelong social conventions about being a user of their language. They might be dying, but “They don’t back away from their interactional responsibilities,” David says. They honour turn-taking; they don’t interrupt. They tell jokes, they use family language, and they create mini-rituals of inclusion and exclusion, often to deal with the communication asymmetries.
“If I were picturing the developmental arc,” says David, “it wouldn’t be coasting down into death. It would be all the way and sometimes heightened. The kind of complex literacy you need to use in a hospital setting in a serious illness, and managing all your oncological terms – it’s almost like the competencies themselves get expanded in this end of life.”
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In his lab, Bob is examining even more fleeting aspects of conversations, such as pauses. It’s an interesting choice, because pauses might be considered as a sign that a speaker has lost their way or that an interaction is breaking down. On the other hand, pauses are easy to locate in the acoustic signals of recorded conversations. And they might indicate where someone is listening or about to say something important, so they might be a good thing.
Bob’s team used machine learning to identify pauses of 2 seconds or longer in spoken conversations, then human coders like Brigitte Durieux tried to categorise them, looking for ones that were more than just silence.
Because they didn’t have access to what the doctors or patients were actually thinking, they looked for the presence of emotional words and other sounds like sighs or crying on either side of the pause. Did a question about the quality of life, treatment hopes, prognosis or dying precede the pause? If so, the pause may have been because the doctor invited the patient to consider something.
The team found that during some of these pauses, some connection, shift or transformation was occurring. These “connectional silences” were rare. Out of a set of 1,000 clips with pauses, a mere 32 were connectional in nature. They were brief, as well, most lasting less than four seconds. But there’s still power in them.
The dynamics of a conversation change dramatically after such a connectional silence. Suddenly, a patient will be talking more than they did earlier. They’ll be directing the conversation, not the doctor. It’s as if the mutual agreement to pause for two seconds spilled into an agreement to shift roles.
“No, for some reason I guess I just in my head was gonna be on [chemotherapy] for the rest of my life and everything was gonna be hunky dory and…” a patient begins.
A 2.9-second connectional silence follows. The doctor inhales audibly, to signal they will respond, which makes the patient pick back up.
“You know. I knew early on, I mean you told me early on it’s not like and then this will be the rest of my life. Something, you know, might go down.”
The doctor responds. “Something. That can be a very hard thing to think about. That here we found something that’s helping but you can’t stay on it for the rest of your life.”
In other moments, the silence comes after a doctor has said something empathetic.
“It’s rare of me to tell somebody point-blank you’ve got to stop. However, I will say you have my permission to set limits,” the doctor says.
“Okay,” says the patient, then falls silent for nearly seven seconds.
His wife chuckles. “He can’t stand the thought of it. I can tell by his laugh,” then she laughs.
“I know he can’t stand the thought of it,” the doctor says.
“No, that’s okay,” the patient says. “I’ll get used to it.”
Or in another instance, the doctor tells a patient’s spouse, “what you feel is really hard. It’s really hard.” There’s a 2.8-second silence.
“I just wish he had a better quality of life.”
“I know, I know,” says the doctor.
Even though these connectional silences don’t happen often, Bob thinks they’re good linguistic markers of connection exactly because doctors don’t commonly use them. When someone good at monologuing and interrupting falls silent, it may mean they’re allowing something else to happen.
Bob surmises, “More often than not, the conversations that have a lot of space in them are probably going to lead to people feeling more heard and understood.”
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Judy had a question. Having come to the hospital at the University of Vermont to recover from the flu, this elegant, 83-year-old woman was lying in her bed. Two doctors had come to her room bearing news. It was cancer, not the flu, and it had spread from her liver. She could undertake a course of chemo, or she could have her pain managed as she died.
She turned to her daughter, Kate, sitting beside her. “What should I do?” she asked.
When the doctors had requested this meeting, Kate had dropped everything to be there. It seemed unusually serious. Now she knew why. She wondered why she hadn’t seen the signs of her mother’s cancer. Judy’s skin had started to look yellow, she recalled. But instead of recommending a check-up, she bought her mother some pinker make-up.
In this pivotal conversation, the doctors presented the options but also wanted to know what was important to Judy. They knitted the science together with thoughtfulness and compassion. Kate was struck by their slow, almost languid approach to delivering the news.
Slowly it dawned on her that this was a conversation about her mother’s death. Neither of them had prepared for this. Not now, not so soon.
“It had the nature of a conversation with a clergyperson rather than a doctor,” she remembers. Pastoral kept coming to mind.
At the end of the conversation, one of the doctors gave her his card. It was Bob Gramling. Kate has since seen the bright blue spectrographs showing gaps in conversation – where the pauses occur. She thinks these are important moments as well.
“Where there’s silence, where there are gaps, that’s where the caring shows up,” she says. “I think it’s incredible work to point out to doctors there’s a lot going on in the silences.”
Bob and David have only scratched the surface of how these conversations work. So far they have only studied English speakers, for example; pauses work differently in other cultures, so they need data on those moments, too. And because their data comes from people with cancer, there’s a concern that the analysis may be skewed.
With cancer, says Wen-Ying Sylvia Chou of the National Cancer Institute, most patients have time: “They continue to be themselves and continue to be part of the conversation and any ongoing discussion.” With other diseases, though, there could be more risk that the person would “lose cognitive function or physical function”. In those cases, she says, conversations “would look very different”.
Healthcare’s use of natural language processing – technologies that treat language as data – is expanding, and the chances are good that research like that of the Gramlings will expand to cover conversations with people who have other serious illnesses.
What is a conversation?
Bob isn’t the only researcher exploring the use of artificial intelligence in palliative care. In 2017, James Tulsky, a palliative care physician at Dana-Farber Cancer Institute in Boston and a Harvard professor who studies health communication, stressed that “mass-scale, high-quality automated coding will be required” to give feedback that helps clinicians improve their expressions of empathy.
Tulsky turned to Panayiotis Georgiou, a computer engineer at the University of Southern California, to develop automated detection of emotional connections between doctors and patients. In 2017, a team headed by Georgiou showed that certain acoustic features of the speech of couples in counselling could be used to predict marital outcomes. What if algorithms could do the same for palliative care conversations?
“The technology in theory exists out there to do all this,” Tulsky says. “It’s just a matter of doing enough research, running enough iterative trials, training up the machines to actually get these algorithms trained well enough so you could apply them to more random talk.”
I ask Judy’s daughter Kate what she thinks of using artificial intelligence to enrich human connections. “I wouldn’t worry about the technology,” she says. “The more technology, the more sacred the conversation becomes.”
What does she mean? Anything that enables humans to use their voices more effectively with each other is a good thing, she explains: “It’s because of the increasing technology that the interaction becomes more wonderful.”
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What is a conversation? It’s a setting where humans interact, often for a purpose but sometimes for none at all. People have to learn how to have conversations but when they become expert in their culture’s conventions, conversing becomes so automatic it feels natural.
Modern healthcare has hijacked conversation and made it a tool by which physicians can achieve their ends.
According to David, “The contemporary hospital still understands ‘conversation’ as ‘making a pre-determined X happen through conversation’.” This is a barrier in serious illness and end-of-life care, where the conversations need to be venues for figuring out what the X might be.
At the end of a patient’s life, there may not be effective medical treatments, just things to discuss and plans to make. This may need a more natural conversation than a medical one, a conversation in which none of the participants may know what the outcome will be.
After all, these conversations aren’t just for doctors; they’re for patients, too. And family members, nursing aides, housekeeping staff. “There are a lot of human beings who have a vested interest in this other human,” Bob says.
There are critics who don’t think artificial intelligence and machine learning have a role to play in palliative care. Bob’s view is that shying away from analysing this kind of conversation in this way means that essential opportunities for improving it will be missed.
“It is helpful, as a discipline that has historically thought of communication as just the art of medicine, to actually think that, no, this is a science,” he says. And understanding that science could help us re-engineer the healthcare system to support more meaningful conversations.
He’s aware of the delicacy in institutionalising and commodifying a human interaction, though. “As a physician,” he says, “I was afraid of being a researcher that was going to oversimplify this kind of sacred experience into something that’s measurable and convenient and essentially meaningless.”
That’s where Brigitte Durieux struggled with her feelings as she listened to thousands of audio clips of pauses. In some conversations, people were laughing, but she was struck by the loneliness in others. She had begun to recognise patients’ voices and wondered what had happened to them.
“Nobody is perfect, but there are times when one realises there’s something that could be said to make this feel less like a loss,” she says. Sometimes she whispered under her breath something the doctors could have offered instead.
After Bob found Brigitte crying, he wrote an ethics proposal to the hospital so that he could introduce a new procedure into his lab. He borrowed an idea from the hospital’s palliative care unit, where staff gather every week to say the names of people who have died, then ring a singing bowl.
Now, at the start of every Vermont Conversation Lab meeting, a researcher reads the name of one of the patients from the database and rings the bowl. So far, they have gone through the list of names twice.
The ceremony helps, says Brigitte, because it reduces the guilt of turning a sensitive moment in someone’s life into a piece of data.
“What it does ultimately,” she says, “is recognise the humanity of things.”
After helping a girlfriend through the messy, tangled finances left in the wake of a parent’s death, John Kerecz had a message for his own mom and dad: Get your paperwork in order.
A few years later, Kerecz’s father passed away unexpectedly. The 52-year-old environmental engineer from Harrisburg, Pennsylvania went to the house and looked where his father and mother used to keep their important documents, but nothing was there. It was pure luck that he went to the computer to look up a phone number and saw a folder on the desktop labeled “DEATH.”
“Sure enough, everything was there in that folder,” Kerecz says.
Armed with a copy of the will, lists of the financial accounts and insurance policies and other paperwork, Kerecz was quickly able to settle his father’s estate and use the funds to take care of his ailing mother, making him extremely grateful.
The difference between having your files organized or not is about more than just stress; leave behind a mess and it can delay inheritors’ access to funds and cost a bundle in legal fees.
“It could be six months or longer if you don’t have the paperwork in order, and … your family is in the dark, not knowing things, jumping through hoops. It’s not a fun existence,” says Howard Krooks, past president of the National Academy of Elder Law Attorneys.
Taking care of the necessary documents is a hallmark of good parenting, he adds, rather bluntly: “More than any kind of monetary legacy, if you really love them, you’d do this.”
HOW TO GET IT DONE
Compile a list of the financial information your heirs will need upon your death: wills, trust information, investment accounts, legal contacts, etc. You can keep this information in an electronic file – in one master document or several attachments – to serve as a road map to find all the physical paperwork.
Or, you can do what some of elder law attorney David Cutner’s clients do, and just pull out a cardboard box and start piling up the papers.
You have to do more than just gather the information, though, cautions Cutner, co-founder of the Lamson & Cutner Elder Law firm in New York. You have to tell your loved ones you have done it and tell them where to find it. You can either hand over the file immediately or keep it in a safe place (away from the prying eyes of caregivers and potential scammers).
A safe deposit box, by the way, is not a good place to keep these papers, says Cutner, because it’s too hard to access when needed.
THE WILL
Top of the list is a copy of your will, hopefully the most recent version, plus contact details for the attorney who drew it up and any executor named. Also important are trust documents, if they exist, estate experts say.
While power of attorney and living will documents are crucial should you become incapacitated, they will not be useful after your death, says Krooks – your heirs will then be using a death certificate to obtain access to accounts.
The real power in assembling all these items is that it forces you to go through the process of specifying your wishes. Without them, your family would have to put your estate into probate, which is when the state determines the distribution of your assets. This can take up to a year and eat up about 5 percent of the estate, says John Sweeney, an executive vice president responsible for Fidelity’s planning and advisory services business.
FINANCIAL ACCOUNTS
Your heirs will need to know all of your account information, down to your utility bills and your tax returns. You can either create a list or include copies of statements in the file, or just directions to where to find them. Also useful is a list of relatives to contact.
Knowing passwords for online accounts is not as important as naming another person on key accounts ahead of time, says Sweeney. This way, if the family needs to make mortgage payments or pay any medical bills, they do not have to wait until the estate is settled.
“Children are often dipping into their own assets to pay for taxes and mortgages when the last surviving parent has passed away,” says Sweeney.
In that same vein, make sure to sign another person up for a key to any safe deposit boxes or home safes, says Krooks. Include clear directions on how to access any other valuables that may be stashed elsewhere, so that it’s not mistakenly thrown out.
SURVIVOR BENEFITS
Pensions and insurance plans have many different payout rules, so you need to leave behind detailed information about policies. Insurance information should extend beyond life insurance to car, home and boat insurance, says Sweeney. It is also critical to include your Social Security benefit information, he adds.
The job of assembling all of this information can be massive, but most people appreciate it in the end.
“At first they curse us out because it’s so much to gather and put in one place. But by the time they come into the office, they’re really glad they did this exercise,” Krooks says.
Since he watched his mother collapse and die, Richard Bridgman’s fear of death has left him emotionally paralyzed.
It was right around Thanksgiving—nearly 45 years ago—and Bridgman was sleeping overnight on his mom’s living room couch.
“In the middle of the night, she walked into the room and said, ‘Richard, I’m dying,’” recalls Bridgman, who tried to reassure his mom that she’d be OK. But his mother, who had a heart condition, was suffering a massive heart attack. “She looked at me and fell over on her head. I didn’t know what to do. She was dead.”
Death haunted much of Bridgman’s early years. His stepfather died when Bridgman was 15. His father, an alcoholic, died when Bridgman was 17. And Bridgman was 26 when his mom died before his eyes. Now, 72, and long retired from the bill collection business he once owned in the Springfield, Illinois, area, he has spent most of his adult years trying to cope with—if not overcome—his immense fear of death.
“Death became an obsession,” he said. “No matter where I went or what I did, death was always in the back of my mind.”
Most people prefer not to think about death, much less plan for it. In a tech-crazed world, where communication is broken into 140 characters and six-second sound bites, our connection with each other is dissected into so many bite-sized morsels that discussion of death would seem an unwieldy topic of conversation.
“Everybody has a fear of death, no matter what culture, religion, or country they come from,” said Kelvin Chin, author of “Overcoming the Fear of Death,” and founder of the Overcoming the Fear of Death Foundation and the nonprofit turningwithin.org. “Fear is simply an emotion caused by the anticipation of unhappiness.”
But wait. What if death isn’t actually unhappy? What if it simply—is? For Bridgman, whose fear of death was overwhelming, that simple question was a critical step in learning to deal with death. That question was posed to him by Chin, whom he discovered via a Google search. Several supportive phone consultations with Chin—combined with a simple meditation process that Chin teaches—have helped to keep Bridgman’s fears under control.
“I spent so much money on psychiatrists and psychotherapists—none of them did any good,” says Bridgman. But Chin steered Bridgman toward meditation. “Meditation is better than medicine,” Bridgman said.
Everyone must figure out their own way to handle the fear of death. One expert, who overcame her own fear through years of attending to the dying, says death is rarely the terrible thing that most folks fret about.
“Death is usually a peaceful process,” explains Donna Authers, a professional caregiver, motivational speaker, and author of the book “A Sacred Walk: Dispelling the Fear of Death and Caring for the Dying.”
“Very few people die screaming. They just go to sleep.”
But it took Authers years to learn the lesson that death need not be frightening. As a child, death haunted her. When she was 2 years old, her father was killed in World War II. Her mother, who had remarried, died on Authers’ fifth birthday. “Instead of a birthday party, I woke up to the worst day of my life,” she said. Her grandfather committed suicide when Authers was 15.
It was Authers’s grandmother—while dying from cancer—who taught her the most critical lesson in accepting death’s inevitability. Authers brought her grandmother home to tend to her during her final days, but her grandmother could sense her granddaughter’s terrible fear.
That’s when her grandmother took her by the hand and, unafraid, reminded Authers, “Death is part of life. You, too, will be where I am someday, and you can’t face death with fear,” she said. That changed everything. Seeing her grandmother bravely face death caused her own fears to dissolve.
“I was no longer afraid of death and dying,” Authers recalls.
Authers ultimately left her job as an IBM marketing executive to become a caregiver. Through the years, she has found that faith is the most important quality among those who face death without fear. “People who have faith in something don’t grieve like those who have no hope,” said Authers.
Increasingly, however, Chin has found that millennials—more than any other demographic—fear death the most.
“It’s the downside of social media,” said Chin. “The bombardment and speed of communication lead to an overload that can trigger a fear of death.”
Perhaps even the world of politics can play a role, suggests Sheldon Solomon, professor of psychology at Skidmore College and author of “The Worm at the Core: On the Role of Death in Life.”
In times of political upheaval—particularly when people are reminded of their mortality—the fear of death increases, even as they tend to be attracted to political figures who promise them more security, said Solomon, who has conducted numerous experiments on this issue.
“When people are reminded of their own mortality, in an effort to bolster faith in their own view of reality, they become more hostile to anyone who is different.”
Even then, says Solomon, perhaps nothing alleviates a dying person’s fear of death more than love.
A terminally ill grandmother he knew was distraught at the prospect of death. No doctor and no medicine could help her. Then, she received a short phone call from her granddaughter, begging her for her cupcake recipe. “No one can make them like you,” her granddaughter said.
“That call did more in five minutes than anything else could have,’” says Solomon. “It reminded the grandmother that she will live on in the memories of the people she loves. That was all she needed to know.”
When Maine passes a law allowing physician-assisted dying (PAD), it will be joining nine other jurisdictions in the United States.
By October, one in five Americans (22%) will have a law that allows terminally ill patients, most of whom have cancer, to choose an end to their life with medical help from a doctor.
However, the practicalities of actually doing so are formidable, and patients who choose this option find there are many obstacles in the way.
First is finding a doctor who will participate. Many doctors have moral objections to PAD, refuse to participate, and will not refer patients.
This sounds familiar to Charles Blanke, MD, professor of medicine at the Knight Cancer Institute at Oregon Health and Science University in Portland, who has been participating in PAD since it was legalized there in 1997.
Blanke says patients have told him that after being turned down by their physician, they also were not given a referral; instead, they were told by their doctor that “they don’t know anyone, and good luck finding someone.”
I believe this is patient abandonment.
Dr Charles Blanke
“I believe it is patient abandonment,” Blanke told Medscape Medical News. “For some patients, it takes them months to find me, so it’s no wonder many are too ill by then to proceed.”
In general, eligible patients say that PAD was not offered to them, Blanke said, but he argues that “it is legal and should be put on the table.”
He emphasized that physicians should never be pressured to participate in PAD, but they should refer patients. “We need to make it more patient friendly and more accessible.”
For years, Oregon was the only state that allowed the practice.
In recent years, however, other states have passed similar laws — Washington in 2008, Montana in 2009, Vermont in 2013, California in 2015, Colorado in 2016, Washington, D.C. in 2017, Hawaii in 2018, and New Jersey just a few weeks ago.
Lack of Training
That some doctors do not want to participate in PAD is understandable; many have moral objections to the whole idea, citing the Hippocratic oath to ‘do no harm.’
But there are signs of a shift toward more acceptance.
For instance, a 2018 Medscape ethics report found that 58% of doctors who responded to the survey said physician-assisted death should be available to the terminally ill, similar to 57% in 2016, and up from 54% in 2014 and 46% in 2010.
However, doctors who are willing to participate find it difficult to do so.
“The law makes no provision for medical training, there is no formal system, and I believe that is one of the major barriers and a shortcoming of the law in every state where it is legal,” said Lonny Shavelson, MD, a California physician based in the San Francisco area who specializes in aid in dying. He founded Bay Area End of Life Options in 2016.
“I agree that sometimes there is a moral objection, and there is sometimes institutional resistance, but most commonly it is lack of training,” he said.
Doctors, as a rule, like to do things they’ve been trained in.
Dr Lonny Shavelson
“Doctors, as a rule, like to do things they’ve been trained in and don’t like to do things they haven’t been trained in,” he added.
He noted that his practice has received more than 800 requests for medical aid in dying from different patients throughout California.
“Every patient who comes to us does so because they can’t find another doctor,” he said. “Everyone thinks it’s because of moral objections or that the patients live in rural communities, but it’s not the case for most of the patients.”
Shavelson told Medscape Medical News that he always calls the patient’s doctor, and most of them are not morally opposed to participating in PAD. “But what they tell me is that they’ve never been trained and that they don’t know anything about it. They don’t know what medications to use, or anything about the paperwork or protocol,” he said.
Barriers To Access
“The great news is that we have 22 years of data in Oregon, and the law is protecting patients,” says Kim Callinan, CEO of Compassion & Choices, the largest national advocacy group for aid in dying.
“But we also have robust data showing that the law is not meeting its intentions and that we have erected too many barriers for many to access it,” she told Medscape Medical News.
Callinan believes that improvements are needed to allow the original intention of the law to take place. “We want to keep the right safeguards in place,” she said. “But we are seeing such small numbers of people using it, and in many cases it’s because they can’t get access.”
Recent reports confirm that the number of patients who have chosen PAD — and who have completed the process — remains small.
For example, data from Oregon show that from 1997–2018, prescriptions have been written for 2217 people, and 1459 patients have died from ingesting the drugs.
In California during a single year (2017), 577 individuals received prescriptions and 374 people died after ingesting the medication.
Shavelson feels the actual demand for PAD is not reflected in the current statistics, and the numbers would probably be much higher if there was more access to physicians.
He argues that a more accurate survey would be to identify how many patients have requested PAD but could not find a physician to help them, he said. Shavelson believes that number would be significantly higher than what has been documented.
Institutional Barriers
In some cases, it is not the physician making the decision but the healthcare system.
A recent survey of 270 California hospitals, conducted 18 months after implementation of the state’s End of Life Option Act, found that 61% of hospitals had a policy forbidding physicians to participate (JAMA Intern Med. 2019;179:985-987).
“We found that of the 164 hospitals in California that opted out, 56% allowed physicians to refer patients to another provider and 29% of hospitals did not provide any guidance on this question,” said lead author Cindy Cain, PhD, assistant professor in the Department of Sociology at the University of Alabama at Birmingham.
“I support the idea that a health system can opt out,” says Peg Sandeen, PhD, MSW, executive director of the Death with Dignity National Center, a nonpartisan, nonprofit organization. “As much as I don’t like it, and think physicians should be free to practice, the health system has that right to do so,” she said.
However, not referring patients is an entirely different issue. “The outright act of refusing to refer a patient puts the physician into an ethical quandary,” she said. “Referral is part of how medicine is practiced, but it is up to the individual physician to make that determination.”
Waiting Times Present Another Barrier
The whole PAD process requires two oral requests with a waiting time of at least 15 days between them, and also a written request using the statutory form included in the state’s aid-in-dying law.
There are slight variations among states (eg, Washington, DC also requires two witnesses). Many states also require a second waiting period, in which the physician must wait 48 hours from the time of receiving the written request to write the prescription.
Callinan believes that the waiting periods, as well as the need for two doctors to confirm eligibility, are redundant in some cases. “The eligibility is that a patient has 6 months or less to live, and 2 doctors have to certify that,” she said.
“But if someone is already enrolled in hospice, as many are, it has already been determined that they meet the 6-month criteria and that the decision has been made to forgo treatment. In this case, they should only need one doctor to authorize it,” she argues.
A new law in Oregon may cut some of the waiting time, as it allows physicians to make exceptions to the waiting periods if the patient is likely to die before completing them.
“Oregon law has not evolved since it was written 20 years ago,” said Blanke. “This new bill will eliminate the waiting period for those who are imminently terminal. It won’t affect very many people, but it will help a few get quicker access.”
Shavelson praised the new Oregon law. “I think the 15-day waiting period is obscene because it’s not 15 days,” he said, explaining that it may be more like 3 or 4 months, as patients have to find a doctor and then may have to wait weeks for an appointment.
“The idea was that it was supposed to be a period of contemplation, but many patients have been contemplating since they got their diagnosis,” Shavelson pointed out. “They didn’t start thinking about it when they first made their request — they have been thinking about this for a long time.”
Patients in this waiting period may be dying or losing the mental and/or physical ability required for self-administration of the drugs, he explained. In his own clinical practice, about 30% of patients die during the 15-day waiting period, he estimates.
This is a similar proportion to that found in recent study from Kaiser Permanente Southern California, where one third of patients became too sick or died before the process was completed (JAMA Intern Med. 2018;178:417-421).
Accessing and Taking the Drugs
Even for patients who do manage to get through the bureaucracy, there are challenges in the practical steps of actually obtaining the drugs. A physician can only write the prescription and it is up to the patient to procure the drugs.
When states began to first legalize PAD, the drugs of choice were oral pentobarbital and secobarbital. However, as of 2015, both of these drugs have been largely unavailable, as previously reported by Medscape Medical News.
Through trial and error, a group of physicians eventually developed a drug regimen (DDMP2), which contains diazepam 1 g, digoxin 50 mg, morphine 15 g, and propranolol 2 g. It is more complicated than the barbiturates but has been found effective.
Shavelson explained that an updated version known as D-DMA (no propranolol and amitriptyline 8 g added), which is both faster and more reliable than all other protocols, is in the process of replacing DDMP2.
Both formulations are compounded by a pharmacist and available as a powder, which then must be mixed with 4 oz of apple juice and taken as a liquid/suspension.
Shavelson noted that physicians may not know where a patient can fill the prescription.
“It’s not something that can be filled at the local CVS or Walgreens,” he said. “A regular pharmacy doesn’t have the ingredients on hand, and for the DDMP2 combination, it has to be compounded.”
In California, two pharmacists currently fill about two thirds of the prescriptions. “Pharmacists need training as well,” Shavelson contends. “They are an integral part of this process.”
Even the last step in the whole process, the actual ingestion of the drugs, can be difficult for some patients.;
State law requires that the lethal dose be self-ingested via the digestive tract (orally or through an nasogastric (NG) or gastrostomy tube). The restriction that the drugs must be self-administered was to help ensure no one could harm a patient against his or her will.
However, many terminally ill patients are so sick they can’t physically mix the solutions, pick up and take the medicine, or swallow the drugs. Blanke estimates that around 10% of the patients he has evaluated have swallowing issues, and they fear that they will be unable to swallow the medications when they are ready to die.
To get around these practical difficulties, a proposed bill in Oregon sought to allow patients to self-administer intravenous drugs.
“There are many people who cannot swallow or administer through an NG tube, so just pushing the button on a pump syringe would allow them to take the medication,” said Blanke. “The IV could be put in right before they used it.”
Putting in an IV is easier than an NG tube, he explained, and much less invasive than a gastrostomy tube. “There’s really no difference between them, as far as putting medication in,” Blanke said. Both require some intervention and hold the same risk that someone else can administer the drugs.
Although the bill passed through the Oregon House of Representatives, it stalled in the Senate and has not moved forward. Some opponents of the bill feared that it would move Oregon closer to allowing euthanasia, while others cited the high cost of pump syringes.
Blanke believes that much of the opposition was really directed at the concept of assisted dying. “The arguments were with Death with Dignity,” he said. “Not the idea of making changes in the law or the use of an IV.”
The practical difficulties of PAD in the United States contrast with a much simpler process in Canada. Since 2016, Canada has legalized medical assistance in dying, which allows for both physician-assisted euthanasia and self-ingestion of a lethal dose. Patients have overwhelmingly selected physician-assisted euthanasia, where the lethal dose is administered intravenously by a clinician. According to Health Canada, of the nearly 7000 Canadians who have chosen to end their lives since the law went into effect, only six people have opted to self-administer drugs.
Physician Education and Training Needed
The biggest barrier — and the most imperative need — is physician education and training in PAD, argues Shavelson.
“Traditionally, teaching happens at large institutions, medical schools, universities, academics — but they won’t touch this,” said Shavelson. “They don’t want their reputation so-called ‘sullied,’ and are frightened that their reputation will take a hit. I don’t think that’s true, and I think people would feel that it’s a good thing to have medical centers more involved in this.”
Academia has fallen down on their responsibility, he contends. “This is a legal medical procedure and there is not one medical institution in my state [California] that is doing formal training on this. It’s not part of any conferences or any continuing medical education.”
As an example, the University of California, San Francisco, forbids palliative care residents and fellows from participating in aid-in-dying practices. The end result is that there are palliative care fellows coming out of training who have no experience in this area.
“Their patients will be asking about it, since palliative care doctors get asked about it more than any other specialty except for oncology,” said Shavelson. “So we will have palliative care and hospice doctors who have no training in it, and that’s absurd. This is part of the realm of what they are going to have to deal with in their practice, and institutions have forbidden it.”
However, next year the first conference for clinicians on medical aid in dying will be held in Berkeley, California, and will really delve into the nuts and bolts of practicalities, Shavelson explained. “The topic has come up at conferences, and there have been other gatherings to discuss it, but the focus has been on policy and ethics.”
As with birth, dying is a process. How does it unfold? Can you prepare for it? And why should you keep talking to a dying person even if they don’t talk back?
We’re born, we live, we die. Few things are so concrete. And yet, while we swap countless stories about the start of life, the end is a subject we’re less inclined to talk about.
Conversations about death – what it is, what it looks like – are scarce until we suddenly face it head on, often for the first time with the loss of a loved one.
“We hold a lot of anxiety about what death means and I think that’s just part of the human experience,” says Associate Professor Mark Boughey, director of palliative medicine at Melbourne’s St Vincent’s Hospital. “Some people just really push it away and don’t think about it until it’s immediately in front of them.”
But it doesn’t need to be this way, he says.
“The more people engage and understand death and know where it’s heading … the better prepared the person is to be able to let go to the process, and the better prepared the family is to reconcile with it, for a more peaceful death.”
Of course, not everyone ends up in palliative care or even in a hospital. For some people, death can be shockingly sudden, as in an accident or from a cardiac arrest or massive stroke. Death can follow a brief decline, as with some cancers; or a prolonged one, as with frailty; or it can come after a series of serious episodes, such as heart failure. And different illnesses, such as dementia and cancer, can also cause particular symptoms prior to death.
But there are key physical processes that are commonly experienced by many people as they die – whether from “old age”, or indeed from cancer, or even following a major physical trauma.
What is the process of dying? How can you prepare for it? And how should you be with someone who is nearing the end of their life?
What are the earliest signs a person is going to die?
The point of no return, when a person begins deteriorating towards their final breath, can start weeks or months before someone dies.
Professor Boughey says refractory symptoms – stubborn and irreversible despite medical treatment – offer the earliest signs that the dying process is beginning: breathlessness, severe appetite and weight loss, fluid retention, fatigue, drowsiness, delirium, jaundice and nausea, and an overall drop in physical function.
Simple actions, such as going from a bed to a chair, can become exhausting. A dying person often starts to withdraw from the news, some activities and other people, to talk less or have trouble with conversation, and to sleep more.
This all ties in with a drop in energy levels caused by a deterioration in the body’s brain function and metabolic processes.
Predicting exactly when a person will die is, of course, nearly impossible and depends on factors ranging from the health issues they have to whether they are choosing to accept more medical interventions.
“The journey for everyone towards dying is so variable,” Professor Boughey says.
What happens in someone’s final days?
As the body continues to wind down, various other reflexes and functions will also slow. A dying person will become progressively more fatigued, their sleep-wake patterns more random, their coughing and swallowing reflexes slower. They will start to respond less to verbal commands and gentle touch.
Reduced blood flow to the brain or chemical imbalances can also cause a dying person to become disoriented, confused or detached from reality and time. Visions or hallucinations often come into play.
“A lot of people have hallucinations or dreams where they see loved ones,” Professor Boughey says. “It’s a real signal that, even if we can’t see they’re dying, they might be.”
But Professor Boughey says the hallucinations often help a person die more peacefully so it’s best not to “correct” them. “Visions, especially of long-gone loved ones, can be comforting.”
Instead of simply sleeping more, the person’s consciousness may begin to fluctuate, making them nearly impossible to wake at times, even when there is a lot of stimulation around them.
With the slowing in blood circulation, body temperature can begin to seesaw, so a person can be cool to the touch at one point and then hot later on.
Their senses of taste and smell diminish. “People become no longer interested in eating … they physically don’t want to,” Professor Boughey says.
This means urine and bowel movements become less frequent, and urine will be much darker than usual due to lower fluid intake. Some people might start to experience incontinence as muscles deteriorate but absorbent pads and sheets help minimise discomfort.
What happens when death is just hours or minutes away?
As death nears, it’s very common for a person’s breathing to change, sometimes slowing, other times speeding up or becoming noisy and shallow. The changes are triggered by reduction in blood flow, and they’re not painful.
Some people will experience a gurgle-like “death rattle”. “It’s really some secretions sitting in the back of the throat, and the body can no longer shift them,” Professor Boughey says.
An irregular breathing pattern known as Cheyne-Stokes is also often seen in people approaching death: taking one or several breaths followed by a long pause with no breathing at all, then another breath.
“It doesn’t happen to everybody, but it happens in the last hours of life and indicates dying is really front and centre. It usually happens when someone is profoundly unconscious,” Professor Boughey says.
Restlessness affects nearly half of all people who are dying. “The confusion [experienced earlier] can cause restlessness right at the end of life,” Professor Boughey says. “It’s just the natural physiology, the brain is trying to keep functioning.”
Circulation changes also mean a person’s heartbeat becomes fainter while their skin can become mottled or pale grey-blue, particularly on the knees, feet and hands.
Professor Boughey says more perspiration or clamminess may be present, and a person’s eyes can begin to tear or appear glazed over.
Gradually, the person drifts in and out or slips into complete unconsciousness.
How long does dying take? Is it painful?
UNSW Professor of Intensive Care Ken Hillman says when he is treating someone who is going to die, one of the first questions he is inevitably asked is how long the person has to live.
“That is such a difficult question to answer with accuracy. I always put a rider at the end saying it’s unpredictable,” he says.
“Even when we stop treatment, the body can draw on reserves we didn’t know it had. They might live another day, or two days, or two weeks. All we know is, in long-term speaking, they certainly are going to die very soon.”
But he stresses that most expected deaths are not painful. “You gradually become confused, you lose your level of consciousness, and you fade away.”
Should there be any pain, it is relieved with medications such as morphine, which do not interfere with natural dying processes.
“If there is any sign of pain or discomfort, we would always reassure relatives and carers that they will die with dignity, that we don’t stop caring, that we know how to treat it and we continue treatment.”
Professor Boughey agrees, saying the pain instead tends to sit with the loved ones.
“For a dying person there can be a real sense of readiness, like they’re in this safe cocoon, in the last day or two of life.”
Professor Boughey believes there is an element of “letting go” to death.
“We see situations where people seem to hang on for certain things to occur, or to see somebody significant, which then allows them to let go,” he says.
“I’ve seen someone talk to a sibling overseas and then they put the phone down and die.”
How can you ‘prepare’ for death?
Firstly, there is your frame of mind. In thinking about death, it helps to compare it to birth, Professor Boughey says.
“The time of dying is like birth, it can happen over a day or two, but it’s actually the time leading up to it that is the most critical part of the equation,” he says.
With birth, what happens in the nine months leading to the day a baby is born – from the doctor’s appointments to the birth classes – can make a huge difference. And Professor Boughey says it’s “absolutely similar” when someone is facing the end of life.
To Professor Hillman, better understanding the dying process can help us stop treating death as a medical problem to be fixed, and instead as an inevitability that should be as comfortable and peaceful as possible.
Then there are some practicalities to discuss. Seventy per cent of Australians would prefer to die at home but, according to a 2018 Productivity Commission report, less than 10 per cent do. Instead, about half die in hospitals, ending up there because of an illness triggered by disease or age-related frailty (a small percentage die in accident and emergency departments). Another third die in residential aged care, according to data from the Australian Institute of Health and Welfare.
Professor Hillman believes death is over-medicalised, particularly in old age, and he urges families to acknowledge when a loved one is dying and to discuss their wishes: where they want to die, whether they want medical interventions, what they don’t want to happen.
“[Discussing this] can empower people to make their own decisions about how they die,” says Professor Hillman.
Palliative Care Nurses Australia president Jane Phillips says someone’s end-of-life preferences should be understood early but also revisited throughout the dying process as things can change. With the right support systems in place, dying at home can be an option.
“People are not being asked enough where they want to be cared for and where they want to die,” Professor Phillips says. “One of the most important things for families and patients is to have conversations about what their care preferences are.”
How can you help a loved one in their final hours?
Studies show that hearing is the last sense to fade, so people are urged to keep talking calmly and reassuringly to a dying person as it can bring great comfort even if they do not appear to be responding.
“Many people will be unconscious, not able to be roused – but be mindful they can still hear,” Professor Phillips says.
“As a nurse caring for the person, I let them know when I’m there, when I’m about to touch them, I keep talking to them. And I would advise the same to the family as well.”
On his ICU ward, Professor Hillman encourages relatives to “not be afraid of the person on all these machines”.
“Sit next to them, hold their hands, stroke their forehead, talk to them about their garden and pets and assume they are listening,” he says.
Remember that while the physical or mental changes can be distressing to observe, they’re not generally troubling for the person dying. Once families accept this, they can focus on being with their dying loved one.
Professor Boughey says people should think about how the person would habitually like them to act.
“What would you normally do when you’re caring for your loved one? If you like to hold and touch and communicate, do what you would normally do,” he says.
Other things that can comfort a dying person are playing their favourite music, sharing memories, moistening their mouth if it becomes dry, covering them with light blankets if they get cold or damp cloths if they feel hot, keeping the room air fresh, repositioning pillows if they get uncomfortable and gently massaging them. These gestures are simple but their significance should not be underestimated.
What is the moment of death?
In Australia, the moment of death is defined as when either blood circulation or brain function irreversibly cease in a person. Both will eventually happen when someone dies, it’s just a matter of what happens first.
Brain death is less common, and occurs after the brain has been so badly damaged that it swells, cutting off blood flow, and permanently stops, for example following a head injury or a stroke.
The more widespread type of death is circulatory death, where the heart comes to a standstill.
After circulation ceases, the brain then becomes deprived of oxygenated blood and stops functioning.
The precise time it takes for this to happen depends on an individual’s prior condition, says intensive care specialist Dr Matthew Anstey, a clinical senior lecturer at University of Western Australia.
“Let’s say you start slowly getting worse and worse, where your blood pressure is gradually falling before it stops, in that situation your brain is vulnerable already [from reduced blood flow], so it won’t take much to stop the brain,” Dr Anstey says.
“But if it’s a sudden cardiac arrest, the brain could go on a bit longer. It can take a minute or two minutes for brain cells to die when they have no blood flow.”
This means, on some level, the brain remains momentarily active after a circulatory death. And while research in this space is ongoing, Dr Anstey does not believe people would be conscious at this point.
“There is a difference between consciousness and some degree of cellular function,” he says. “I think consciousness is a very complicated higher-order function.”
Cells in other organs – such as the liver and kidneys – are comparatively more resilient and can survive longer without oxygen, Dr Anstey says. This is essential for organ donation, as the organs can remain viable hours after death.
In a palliative care setting, Professor Boughey says the brain usually becomes inactive around the same time as the heart.
But he says that, ultimately, it is the brain’s gradual switching off of various processes – including breathing and circulation – that leads to most deaths.
“Your whole metabolic system is run out of the brain… [It is] directing everything.”
He says it’s why sometimes, just before death, a person can snap into a moment of clarity where they say something to their family. “It can be very profound … it’s like the brain trying one more time.”
What does a dead person look like?
“There is a perceptible change between the living and dying,” Professor Boughey says.
“Often people are watching the breathing and don’t see it. But there is this change where the body no longer is in the presence of the living. It’s still, its colour changes. Things just stop. And it’s usually very, very gentle. It’s not dramatic. I reassure families of that beforehand.”
A typical sign that death has just happened, apart from an absence of breathing and heartbeat, is fixed pupils, which indicate no brain activity. A person’s eyelids may also be half-open, their skin may be pale and waxy-looking, and their mouth may fall open as the jaw relaxes.
Professor Boughey says that only very occasionally will there be an unpleasant occurrence, such as a person vomiting or releasing their bowels but, in most cases, death is peaceful.
And while most loved ones want to be present when death occurs, Professor Boughey says it’s important not to feel guilty if you’re not because it can sometimes happen very suddenly. What’s more important is being present during the lead-up.
What happens next?
Once a person dies, a medical professional must verify the death and sign a certificate confirming it.
“It’s absolutely critical for the family to see … because it signals very clearly the person has died,” says Professor Boughey. “The family may not have started grieving until that point.”
In some cases, organ and tissue donation occurs, but only if the person is eligible and wished to do so. The complexity of the process means it usually only happens out of an intensive care ward.
Professor Boughey stresses that an expected death is not an emergency – police and paramedics don’t need to be called.
After the doctor’s certificate is issued, a funeral company takes the dead person into their care and collects the information needed to register the death. They can also help with newspaper notices or flowers.
But all of this does not need to happen right away, Professor Boughey says. Do what feels right. The moments after death can be tranquil, and you may just want to sit with the person. Or you might want to call others to come, or fulfil cultural wishes.
“There is no reason to take the body away suddenly,” Professor Boughey says.
You might feel despair, you might feel numb, you might feel relief. There is no right or wrong way to feel. As loved ones move through the grieving process, they are reminded support is available – be it from friends, family or health professionals.
The only guarantees in life are taxation and death, according to Benjamin Franklin. For Ellen Arrison of New Salem, that reality is literally sitting inside her living room right now — in the form of a rectangular pinewood coffin.
“I hope it has lots of coffee rings and wine stains on it before I have to use it,” said Arrison, who was one of a dozen participants who took part in a recent coffin-making workshop in Greenfield that was co-sponsored by was co-sponsored by Green Burial Massachusetts and the Funeral Consumers Alliance of Western Massachusetts. According to Arrison, an experienced hospice nurse, making a coffin “made death more real” and caused her to confront end-of-life questions — a subject that she says is taboo in western culture.
“We’re all going to die, but we don’t believe it. Part of life is appreciating the time there is,” said Arrison. Housing the coffin in her living room serves as “a conversation starter” and is a constant reminder of her own mortality. She intends to keep it there until it needs to be used for its intended purpose.
“I knew I wanted a green burial, so that’s part of it too,” Arrison said. “I live in a rural area and I’d like to be buried in my own land. I love it and I’ve spent a lot of time and energy and money — I’d like to give back to the land.”
The coffin making workshop, which was led by Joan Pillsbury of Greenfield, treasurer of Green Burial Massachusetts, a nonprofit advocacy group, cost $210 and covered about two to three hours. Participants made “quick coffins” with pine provided by carpenter Chuck Lakin of Waterville, Maine, who also provided the tools and oversaw the construction process, Pillsbury said. The workshop drew people from varied walks of life.
“Everyone’s skilled were varied. Some people had no experience with tools, some could have finished the project in an hour,” Lakin said. “I tried to explain and guide people through the process.”
Afterward, the group, like pallbearers, “made a ceremony out of carrying their coffins to their vehicles,” Lakin said.“Everyone would carry a coffin to someone’s car, then that person would drive and park. Then they would do the same thing with someone else’s coffin. It must have been a sight for someone just passing by.”
Don Joralemon, a retired Smith College anthropology professor, is keeping his coffin in the basement of his home in Conway. He said he decided to make a coffin because he “isn’t a fan of the funeral industry” and he wanted to take the burden away from his family when the time comes.
“I hope to make use of it in land in Conway,” Joralemon said. “It’s a simple process. You have to get permission from the Board of Health and there needs to be a permanent indication that there’s a grave on the property.”
He said the experience of building the coffin was wonderful and he would recommend it to anyone.
The craft of coffin making
Before making coffins, Lakin, who said he’s been a woodworker since he was 26 when he got out of the United States Navy, made a living as a librarian at Colby College. When his father was dying, Lakin said he spent the last six weeks of his life surrounded by family and loved ones. It was a very personal and moving experience, Lakin said.
“He was in his own bed with each of his family touching him when he passed,” he recalled.
After, his family called a funeral home and his father’s body was taken away.
“He was hauled away and I hated it because it had been so personal and all of a sudden he was gone,” said Lakin.
Later on, Lakin read a manual about how to take care of a loved one after they have died. The book included instruction on how to wash, present and bury someone after death. Before, Lakin noted, “I hadn’t thought of what was next.”
“That’s when I began talking about these things with people,” he continued. “Not to convince them of what to do, but to provide information so they can have the experience I wanted to have.”
He decided to try his hand at making coffins so that others wouldn’t experience the emptiness that he felt. These days, Lakin says he makes between three and five coffins a year and uses the money he makes to travel to events throughout Maine and talk about the options people have funerals.
“People have no idea they have as many options as they do,” Lakin said.
He met Pillsbury at one of these events, the annual Funeral Consumers of Maine, and agreed to hold the coffin-making workshop. If there was enough interest, Lakin says he’d be willing to put on another workshop in the future.
A healing endeavor
For Lakin and the workshop participants, building the coffins was a way of confronting their mortality head-on. According to Lakin, Americans are proficient at ignoring the reality that they are going to die someday.
“You have to recognize and admit it is going to happen,” Lakin said. “It’s a natural part of life; there’s a transition in and there’s a transition out. It happens to everyone. … Your attitude toward it and preparation makes all the difference. It turns what could be a tragedy into a spiritual experience.”
Lakin was speaking from personal experience. When his wife, Penny, died in 2017, Lakin held the funeral at their home. He said he wife was in their house for the last five weeks of her life and, for the duration of those weeks, it was like a “long party.”
“We have a good support group, and we told them to stop by anytime,” Lakin said. “Sometimes there would be 12 people in the living room.”
After her death, Lakin said that two of her best friends anointed and dressed the body. Lakin built her coffin and invited guests to come over and draw and write messages on it. Then after four days, which included a time to display the body, they held a burial ceremony followed by dinner at her favorite restaurant.
“We offered people the ability to do something physical — writing or drawing something — to help them (grieve),” said Lakin. “They were grieving and I don’t think they knew what they were going through.”
Arrison had a similar experience with a home burial as a child after a friend’s grandfather died.
“He was laid out in the living room for three days,” Arrison said, noting, “I, personally, find the idea of viewing a body when it’s presented in an artificial way macabre. It makes it seem disconnected in some way.”
Green burials and the death positive movement
The term “death positive” might seem like an oxymoron, but those who are a part of a growing movement of the same name say it’s an effort to demystify mortality in American culture.
Joralemon, the retired Smith professor who attended the workshop, covered the topic in his book titled “Mortal Dilemmas: The Troubled Landscape of Death in America.” Americans have made death into a taboo subject, he says. But it hasn’t always been that way.
“It didn’t use to be so bad. Deaths would happen in the home. The body would be washed, coffins would be made by a carpenter. It wasn’t a surprise or taboo,” Joralemon said. “Then the profession of funeral director was made when more people were dying in hospitals.”
In contrast to culture’s perspectives on death, he said it’s imperative that people confront their own mortality.
“Life is a transformation and death is part of it,” Joralemon said. “Bit by bit, hopefully, we can start to recover the comfort with death and celebrate the moments before that.”
Along with the workshop, Arrison noted that her experience as a nurse has helped normalize the idea of death.
“I did hospice care for some time and I’ve been with people in the process of dying,” Arrison said. “It was valuable and a privilege. It also makes the inevitability (of death) more real. It’s familiar when it’s happening to someone else. I think that the experience is not difficult or frightening, it’s interesting and curious.”
“You get a health care proxy, a will, build your coffin,” Arrison said. “These activities take some of the dread out of it. It normalizes it and you appreciate the time you have — it’s a procrastination deterrent.”
More than preparation for the end of her life, knowing that she’s going to die someday “softens my heart,” Arrison said. “I know that every person is going to die, too. It enhances the experience of life. I have a more positive perspective. It’s actually life-affirming.”
Lakin said he learned about the term “death positive” from Caitlin Doughty, a mortician and funeral home director in Los Angeles, California, who made videos answering questions about death and dying.
“She started by answering people’s basic questions about death, then she ran out of common questions and had to look for topics,” Lakin said. “I found it informative and entertaining because she has a sarcastic sense of humor. I don’t think she coined the term ‘death positive,’ but I think she popularized it.”
He said the death positive movement coincides with a similar trend called the “green burial movement.” Both stress a more personal quality to end-of-life care.
Green Burial Massachusetts is a grassroots organization that educates people about green burials — where a person is not embalmed and put into a coffin or shroud that will biodegrade along with the body. The person is buried about 3 ½ feet in the ground, where aerobic decomposition can occur.
“A burial will happen on a piece of land 3 ½ feet under the ground, where the person isn’t embalmed and there’s no concrete,” Lakin said. “Everything is biodegradable — the person can be buried in a shroud, a coffin, a cardboard box. They also typically use stone from the area as monuments, engraved with the names and dates.”
Joralemon said his philosophies align with the green burial movement because “this is what we did for millennia and there’s no reason not to set aside land for people who would like a green burial.”
