Okay, we know. It’s not the standard thing you think about with end of life planning. But hear us out. The average cost of a funeral these days is coming in at $10,000. Sure, you can whittle that cost down. Or you can go with a cremationfor around $2,000-$3,000. But it’s still is a lot of money to gather up. This is where donating your body to medical science comes in.
If you really want to go the frugal funeral route, start considering donation. It may sound unorthodox but it’s a vital step in medical education and save your family a lot of money. Here are some general Q&A’s that come along with body donation.
What will your body be used for?
Budding doctors and dentists have to learn anatomy and physiology. Cadavers are a critical part of their education, allowing them to understand things like organ systems and musculoskeletal relationships. If it weren’t for body donation, the first bodies these students could work on would be live patients, which is a little scary.
Researchers also need human tissue to further medical science and develop new procedures or medications to treat debilitating illnesses.
What costs are covered or not covered when donating your body to medical science?
As you can imagine, the body will have to go to the research organization. Normally families have to pay for transportation to funeral homes or to cemeteries. In the case of body donation the medical institution will cover body transportation fees.
If you want to have a memorial service for friends or family, or a burial service of the cremains, you will have to pay for that. Other than that, there are no fees that you’ll have to deal with.
Are any bodies not accepted for donation?
Body donation is usually “whole body” donation, which means the research facility needs the body intact. Bodies that have been autopsied, dissected, embalmed or in an advanced stages of decomposition will not be accepted. You can also expect that if the individual died from a contagious disease like tuberculosis or hepatitis the body would be rejected.
Some institutions will accept standalone eye donations so check with your local institution if that’s something that would be of interest.
What happens to the body after the research is done?
After 1-2 years remains are cremated. The cremated remains (e.g. cremains) will either be buried at the organization’s expense or returned to the family. It’s common for medical students to hold a memorial ceremony for the cadavers before they are cremated.
How do I talk to someone about body donation?
If you want to make arrangements for donating your body to medical science, or talk to someone about the process, contact the closest university-affiliated medical school in your area. If you’re not sure which that is, check out this list from the University of Florida.
There are also private organizations that accept whole body organizations, which include Science Care andMedCure.
Around the time Amy and Ryan Green’s third child, Joel, turned one, he was found to have AT/RT, an aggressive pediatric cancer of the central nervous system. Surgery, radiation, and aggressive chemotherapy were employed, but another tumor emerged anyway. Initially given four months to live, Joel lived another four years, until the cancer finally killed him in March 2014.
Ryan is a video game developer, and Amy is a freelance writer. Their desire to memorialize their son led them to take a groundbreaking step: to create a video game about Joel’s life and death, and their experience of living through that process. The result, That Dragon, Cancer, was released for Macintosh, PC, and the Ouya console on January 12th, 2016, with a Linux version coming soon.
First, disclosures. I was an early backer of That Dragon, Cancer on Kickstarter, and backed it at a level that allowed me to place artwork by my daughters Carolyn and Rebecca into the game. Furthermore, my daughter Rebecca died of brain cancer on her sixth birthday in June 2014. So the topic is very close to me personally.
That Dragon, Cancer isn’t a game, by most definitions of that term. There are no structural barriers to advancing, no opposing forces to overcome, no points to score nor prizes to unlock, and no way to influence the outcome. The only choices you can make are how much of the content to experience, and how quickly you move through the storyline. It is, to my eyes, much closer to a movie than a traditional game, but the control the player exerts over pacing and discovery makes it far more engaging and affecting than any movie I’ve ever seen.
In the end, That Dragon, Cancer is something for which we don’t have a convenient term. It’s a window into other lives that says far more in its two hours than most other forms of media could manage in four, and might even have created a new genre of video games combining that personal window with a console. For the sake of convenience, I’ll continue to refer to it as a “game” and those who experience it as “players,” but I wish I had more honest words to use in their place.
As for a review, it’s difficult to discuss without lessening the impact of the game. I initially debated whether to explain the backstory but eventually came to realize that – just like in a movie one watches repeatedly over the years – knowing how the story ends actually heightens, not lessens, the game’s effect. Your heart breaks for the Greens even as their hearts do not break, in their moments of unknowing hope. Then, when the hopes go unfulfilled, your heart breaks anew.
The game presents itself in a heavily stylized 3D, with human figures looking almost like cartoons of rough carvings, and lacking facial features (other than eyeglasses on a couple of characters), a technique that makes the entire experience curiously more intimate. The constantly shifting viewpoint allows the player to be both observer and participant, evoking the feelings of being both a close confidant to the Greens and of taking their places. Most of the dialogue comes from Amy and Ryan, in their own voices. The spare soundtrack shifts effortlessly between from one mood to another, always illuminating the moment without overwhelming it.
The music, like the dialogue and the scenes we’re presented, can only be described as honest—not in the sense of accurate in the details, but of being fundamentally truthful. What’s remarkable is how clear-eyed the Greens are in every aspect of the journey. Even their anger, disgust, and envy—with each other, with themselves, with the world—are all presented without varnish, but also with judgment. As difficult as it must have been for the Greens to be so open, it must have been doubly hard to avoid excusing or condemning themselves.
So, too, are the Greens very honest about their faith in, and doubts about, God. A fair portion of the game presents their hopes that God will heal where medicine could not, as well as their growing fear that Joel will not survive. The two threads entwine and comment on each other as the game moves into its final levels. What astonished me was how That Dragon, Cancer presents these questions of faith with such clarity and neutrality that you can legitimately see this aspect of the game as either a powerful affirmation of the power of faith, or as a scathing indictment of the futility of faith, based solely on the Greens’ words and how they are presented.
This is but one of the many levels on which the game operates. It challenges you to endure the immediate events of the story even as it provokes intense reflection on what we believe and how we believe it. The game leverages its medium brilliantly, using common game mechanics to comment on the nature of the Greens’ challenges, and employing artful design to weave disparate emotions together—sometimes with great subtlety, and other times quite jarringly. There are radical, unannounced shifts in time and perspective, in which thoughts and scenes jump across hours or years. It’s an astonishingly accurate portrayal of how stress, fear, and grief disrupt the sense of linear time, both in the moment and when looking back in memory.
I’ve asked other players of That Dragon, Cancer about their experience in playing the game, few if any of whom have been through similar experiences in real life. I found that most of them had to take a break from playing the game partway through, and all of them took their break on the same level of the game—the level that was, according to Ryan, the nucleus of the entire game; and those who didn’t take a break said that level was the point where they almost did.
This is a gift that the Greens have given, possibly unintentionally, to those who play That Dragon, Cancer. Because as you go through this journey with the Greens, you always have the final say on whether things will progress or not. You can walk away from the game and do something else, secure in the knowledge that nothing is happening. You can stop short of Joel’s death, if you must. That’s the real benefit of being a game player: you can make that choice. You can decide to pause for a while, to reflect on what you’ve felt and regather your emotional reserves, while time does not progress and Joel gets no closer to dying. Families like the Greens, or like mine, didn’t have the luxury of a pause button.
It’s understandable if a reader’s first reaction is that playing the game sounds scary. I was honestly terrified as I started That Dragon, Cancer for the first time, not sure if I’d be able to get through it in one piece. But I was glad I’d played. It wasn’t easy. There were moments that shortened my breath and made my throat ache with sorrow. Parts of the story are legitimately harrowing—but other parts are peaceful, contemplative, thought-provoking, even joyful. Some moments are all of those things, and more, all at once. For me, the game became a prism through which to examine my grief and my relationship to it, refracted through the Greens and their story, and I was profoundly touched by it.
That Dragon, Cancer is an astonishing look at how one family dealt with the most piercing questions of life and death. It’s a difficult journey for anyone to take, whether or not they have suffered loss, but it’s an astonishingly complex and human work of art that I was honored and grateful to be able to take with the Greens. The thoughts and emotions I experienced while playing That Dragon, Cancer still linger with me, and I expect they will for a long time. If you’re ready for a video game to make you smile and weep and smile as you weep, to show you a family’s life with unflinching honesty and a complete lack of sentimentality in the face of some of life’s most difficult passages, I cannot recommend it highly enough.
Members of the media walk down the corridor inside the Adjustment Center during a media tour of California’s Death Row at San Quentin State Prison in San Quentin, California December 29, 2015. America’s most populous state, which has not carried out an execution in a decade, begins 2016 at a pivotal juncture, as legal developments hasten the march toward resuming executions, while opponents seek to end the death penalty at the ballot box.
I drove the four and a half hours to Rome, New York, the night before I was scheduled to visit the prison hospice program at Mohawk. The desk clerk at the Quality Inn gave me directions the next morning. “You can’t miss it,” she said in a raspy voice. Mohawk had once been a residential home for the developmentally disabled. It occupied the southernmost corner of the 150-acre Mohawk-Oneida campus and was converted to a medium-security prison in 1988. Today, it houses about 1,400 inmates, 112 of whom are inside the “skilled nursing facility,” Walsh Regional Medical Unit, which takes in prisoners from the central and western parts of New York State.What the hospice program at Mohawk did was prevent patients from dying alone. Terminal patients, particularly those dying inside prison, need human contact, companionship, and a chance to talk about their lives, the nurses told me. The program also provided healthy prisoners who had good behavior records the chance to train as volunteers, to give back to their fellow inmates. The program provided a real “sense of satisfaction to our guys,” according to the daytime hospice nurse. “They’re proud of what they’re doing. They’re putting someone ahead of themselves. They’ve put themselves first until now.” Volunteer training took place once a year (and lasted one week), but applications came in throughout the year.
The nurse called the patients in Walsh “my patients” with a kind of endearment that expressed her commitment to them and the program. Among them, 11 were dying of AIDS and seven had major illnesses, like cancer. Special accommodations were made for dying patients—like private rooms with TVs and radios and special meals—but the staff was prepared for the “traps” that such accommodations could bring: trading morphine for cigarettes, being alone with female staff. The program, I was told, accepted patients with six months or less to live, although some live longer. “They have the chance to get involved with their own feelings,” one of the nurses said.Because of my time spent as a hospice volunteer, the tone these staff members used caught my attention. They were proud of the jobs they were doing; they felt they were contributing to the betterment of society. They found their work rewarding and fulfilling. I was in awe of them even as I balked at the paternalistic role they played in helping these prisoners—caged, monitored, “employed,” removed from the world—to “give back.” The concept of rehabilitation may haunt any conversation about incarceration, but the extent to which anyone believes in it gets lost in the practices of policing, sentencing, and incarcerating. It’s easy to suspect that this is in part because of the power dynamic involved. Prisoners are subjected to a particular role inside, one that punishes them for any kind of deviation. They are constantly subject to an unbending authority. When prisoners go into hospice, either as patients or as volunteers, the rhetoric that surrounds their roles is constantly infused with ideas of reform.
Walsh, it seemed, was replicating the hospice model, now decades old, inside its walls. And the old hospice directive—that patients should be helped to think reflectively and reckon with how they’ve lived their lives—fits surprisingly well in prison. It dovetails with the belief that men were incarcerated because they had not taken responsibility for themselves, because they did not understand compassion, did not follow the rules, and did not make themselves productive and useful members of society. Hospice is a way for them to find forgiveness for their sins and to make peace with their world and themselves.
Since prisons were established in the United States, there have always been prisoners dying inside, but the recent rise in the age of the prison population and the need for prison administrators to find ways to care for the elderly, sick, and dying provided them with a new opportunity for rehabilitation: care for the dying. What better way to help a prisoner face his sins than turn his face toward death?There are 2.3 million adults in jail or prison in the United States. That’s the largest number of incarcerated people in the world. Between 1995 and 2010, the number of prisoners over 55 quadrupled. By 2030, they will account for an estimated one-third of all incarcerated people, according to a 2014 report, The High Cost of Low Risk: The Crisis of America’s Aging Prison Population, by the Osborne Association, a prison advocacy group based in New York. Behind prison walls, where every social malady is compounded, is the perfect place from which to consider the future of health-care access and end-of-life care in the United States.
According to the National Hospice and Palliative Care Organization’s 2012 report, End of Life Care in Corrections, there were more than 75 hospice programs in U.S. prisons in 2012. Fifty percent of them rely on inmates as volunteers. A 2011 paper by Katie Stone, Irena Papadopoulos, and Daniel Kelly in Palliative Medicine suggests that the benefit for inmate volunteers is that “they are able to offer patients a level of empathy that cannot be achieved by free people regardless of intention or training.” Inmate volunteers know what it’s like to be a prisoner and can better share experiences and understanding with incarcerated hospice patients. The paper suggests that volunteers “gain valuable psychological rehabilitation” through a “renewed sense of responsibility and care.”
But such programs, according to the study, have two primary challenges: pain and trust. Pain management in a facility where drug use is rampant—and, indeed, a major cause of incarceration—is problematic. Doctors and nurses can find it hard to believe a patient who tells them he’s in pain. “A culture of suspicion emerged concerning the illicit drug trafficking of narcotics intended for pain relief,” the Palliative Medicine report states. The “macho” prison culture also prevented many in pain from admitting what they felt. But a larger issue, one difficult to measure, exists: “Prison healthcare staff may believe that prisoners deserve their suffering.” In other words, pain is punishment. Staff members tend to default on the side of pain over more medication when prescribing narcotics to hospice patients. In church parlance and even in broader society, the belief that pain makes us better people is commonplace. In prison, suffering is part of the centuries-old plan.It’s also hard for prisoners to believe that staff members have their best interests in mind. Can you trust doctors who work for a system that controls every aspect of your life? A system that was established to punish, subjugate, discipline, restrain, subdue? Decisions to limit care (or not pursue every option) can make prisoners even more distrustful of their caregivers. Couple that with the requirement that, in 55 percent of prisons, patients must sign DNR orders before they can enter hospice, and a climate of deprivation, ill will, and doubt about the facility’s objectives can grow. Patient safety is tempered with a paternal “we know what’s good for you” attitude; prisoners who feel their lives are less valued think the system doesn’t care about them or is invested in getting rid of them. Yet sending prisoners to external hospices, as is done in the United Kingdom, or releasing those who are too ill to violate laws, is also a problem. The saddest sentence of the Palliative Medicine report is: “For some, the prison and its inhabitants are all that is familiar due to institutionalization.”
“The challenge is that we can’t lose compassion or cross a line,” a nurse told me, her tone warm and professional.It’s just one of the many health challenges unique to prison populations. Prisoners age faster than those of us outside. “Incarceration not only compounds existing health issues and heightens the risk of further health problems,” states the Osborne Association’s 2014 paper, “but—most alarmingly—has a deteriorating effect on the bodies of incarcerated people.” Incarceration may slow down a prisoner’s perception of time, but it accelerates his body’s. Incarceration takes more years out of a life than just those required by a sentence. Lack of proper mental and physical health care and abnormally high levels of stress and anxiety can make fifty-year-old prisoners’ bodies seem 10 to 15 years older. Of prisoners over 50, 40, to 60 percent have mental-health challenges.
Prisons weren’t designed for elders, either. They require that prisoners climb into bunks and haul themselves up stairs or across long distances. Meals must be eaten in 12 minutes. Daily routines are strictly timed and regimented; one error—due to dementia, disorientation, physical inability, or pain—and punishment is delivered. The physical discipline of prison, meant to rehabilitate the weak, evil, or selfish mind of a criminal, is a questionable approach to reform, at best. For an elderly population, it looks like abuse. But renovating America’s prisons to meet the needs of an aging population isn’t in the budget. Dealing with the needs of prison elders will take a variety of approaches, none of which look easy.The costs of prison health care are, like the costs of public health care, rapidly increasing. The United States currently spends about $16 billion—more than the entire Department of Energy budget—on incarceration of prisoners over the age of fifty. While it costs about
$34,000 a year to keep an able-bodied prisoner locked up, elders can cost as much as twice that amount.
Compassion is a complicated thing. It’s an emotion, both abstract and concrete, shown both in our broad support for groups or issues and in the care that we give those around us. It’s easier to care for people when you trust them, but also when you know you have power over them. When you know they need you.Trust or safety, then, can alter our levels of compassion. I felt guilty for not having more compassion for Moore, a prisoner I met at Mohawk, who later wrote to me, and I didn’t know if it was because of him or because of where I met him. I didn’t want him to be in pain. I didn’t want him to be treated unfairly. But I didn’t want anything to do with him, either. That, I realized, was the line that prison medical staff people had to draw. They may use prison rules or state laws or medical ethics to draw the line. And those laws and rules may make their work easier for them. But it was an institutionalized way of grappling with very complicated emotions like trust and safety and even personal chemistry. Their work is made possible by an ethics, not to be confused with a universal set of moral principles. The ethics of the prison medical staff members was unique to their place of work, a prison. We can and will, as a society, argue about what the laws should be, about what our conscience should let us do.
It was five days after Teresa Van Deusen’s sister died when the letter from American Express arrived, offering condolences. How they knew her sister had died was a mystery—Van Deusen never called to inform them, and they hadn’t made any changes on her account. But there it was, a letter expressing sympathies, and also reminding her of the $16,000 in credit card debt her sister owed.
When someone dies, his or her debt doesn’t disappear. His or her remaining assets get pooled together, and then a probate court doles out payments to cover any remaining debts: First the mortgage; then other secured debts, like car loans; and then, if there’s any money left, unsecured debt, like credit cards. If, say, you’re set to inherit the family house but your parents die with debt that their other assets couldn’t cover, a court can force you to sell the house in order to pay off the debts. Most Americans who have debt don’t die with a ton of money or assets leftover, and credit card companies clamber to get to the estate first, since when that money gets paid off to other agencies, the debt goes away.
Credit card companies have two options: Pursue the debt, or chalk it up as a loss to get a tax credit. For example, Van Deusen’s sister had about $5,000 outstanding on her credit card with Wells Fargo, but the bank chose not to chase it down. “They sent a letter that said, ‘We’re declaring this as a loss, and we’re sorry for your loss,’ and [sent us] a 1099-C”—a form Van Deusen would need to pay taxes on the canceled debt. But plenty of other collectors take other strategies.
“Collecting the debts of the dead—particularly the unsecured debt, like credit card debt—is a pretty good racket,” said Oliver Bateman, a former debt collector who wrote for us last year about his demoralizing experience in that job.
The Fair Debt Collection Practices Act prevents collectors from making threats, calling too many times, harassing family members, or using deception in the pursuit of collecting debt. But collectors can contact family members of the deceased in order to reach the administrator of the estate. Some companies take it one step further, trying to squeeze money out of relatives or friends, even though they have no legal obligation to repay the debts of the person who’s died. (The only time a creditor can legally collect from a family member is if someone has co-signed on a loan or if he or she is the debtor’s spouse and live in a community property state.)
Michelle Dunn, a consultant for the debt collection industry who literally wrote the handbook on debt collection, says this kind of thing “happens every day.”
“Some bill collectors will talk to anybody in the family and try to get them to pay a bill. They’ll say it’s their ‘moral obligation,’ which is absolutely false,” Dunn said. “But people are not educated on what their rights are, and if they’ve just had a death in their family, they’re upset. So when a bill collector tells them something like this, they might be more likely to believe it [and agree to pay the debt].”
Bateman told me about a colleague who used a legal research database to track down addresses of next-of-kin, sent those relatives threatening letters about an owed amount, and then persuaded people there was a “moral obligation” to pay it. “A few times, we got payment in full from the kids or other relatives of these people. It was truly breathtaking,” Bateman said.
The Social Security Administration gives notice to financial institutions a few months after someone dies, but debt collectors usually find out much sooner by using databases to track recent deaths. Dunn, who was a bill collector herself before she became a consultant, told me she always read the newspaper obituaries to see if anyone she needed to call had died. “There used to be a newspaper—I’m sure it’s online now—where you could pay for a subscription and see, state by state, the people who have died that day,” she said.
As these online tools become easier to use, collection companies are increasingly more likely to pursue the debt of dead people, one way or another. There are plenty of horror stories: A woman in Hawaii sued Bank of America collectors, after she says they called upwards of 48 times a day just after she received her husband’s life insurance check. (There’s no obligation to use life insurance to pay off debts, unless the deceased person named his or her estate the beneficiary of his or her life insurance money, in which case it gets divided up with the other assets.) Another woman said she was harassed by collectors for five years about her dead sister’s debt, to the point where she moved and changed her phone number multiple times. The collection agency Rumson, Bolling & Associates was sued in 2011 after harassing debtors’ family members, co-workers, and neighbors, as well as threatening to “desecrate the bodies of deceased relatives” if they failed to pay off funeral bills. The company was eventually banned by the Federal Trade Commission from the debt collection business.
But the worst cases are sometimes people who think they’re doing the right thing by informing a bank, loan, or credit card company that the account holder has died, and then get manipulated into paying the debt.
“Someone will call and say, ‘I’ve been going through my uncle’s mail because he’s passed away and I see you’ve sent this letter that he owes some money, and I’m calling to tell you he’s dead,'” said Dunn. “Some bill collectors will then tell them to pay that bill, and they don’t know they don’t need to, so people pay it.”
Van Deusen, who was the administrator of her sister’s estate, estimates that she spent more than 50 hours on the phone with collectors from BBVA bank, and even more with other credit card companies, which she described as “endless, persistent gas lighting.” She was never asked to pay her sister’s debt out of her own pocket, but she says collection agents tried to get the estate to pay off debts that weren’t even real—including nearly $7,000 in fees that were issued post-mortem, and debts that had already been written off. “Death and taxes, sure,” she said, “but dead people shouldn’t be paying debt that the credit card companies have already written off.”
Van Deusen also battled numerous calls from a third-party collection agency that claimed they had purchased her sister’s American Express debt and demanded money from the estate. “I said, ‘Show me a contract.’ Any evidence this was her debt. In the year we were negotiating, they just never produced that.”
Many collection agencies, including the one where Bateman worked, pay employees based on how much debt they collect, which can motivate collectors to squeeze every last dollar out of a family—whether it comes from the dead person’s estate or otherwise. I asked Bateman if he ever felt compelled to bully a debtor, or a family member, in order to earn higher commission. “Sure, all the time,” he said. “Sometimes, I’d have an argument with a particularly sassy debtor who wasn’t going to pay me any money, just because it was fun to do.”
“It’s a recipe for someone to push the limits and break the law because he or she is desperate trying to get these people to pay,” said Dunn. “It’s setting them up to do something wrong.”
A suit made of mushroom spores helps decompose bodies sustainably.
By Alex Janin
Jae Rhim Lee doing a TED Talk in her mushroom burial suit.
With the rise of electric cars, sustainable architecture, eco-friendly diets, composting, and countless other options, forging a sustainable life is often as easy as it is trendy. Now it’s even easy after death thanks to a bodysuit made from a decidedly old-school material: mushrooms.
The Infinity Burial Suit, a one-piece garment designed to be worn in the afterlife, is sewn with mushroom spore–infused thread. Although researcher Jae Rhim Lee debuted the idea in a 2011 TED Talk, her New York–based company, Coeio, only recently announced that the suit will be available for purchase midway through 2016. The pet option—which is a sack rather than a suit—is projected to go on sale March 1, the cofounder of Coeio, Mike Ma, told TakePart.
The suit also comes with an environmentally friendly embalming fluid and a mineral applicant made of mushroom spores. The two are supposed to be applied directly to the body to work in tandem with the suit to speed up the decomposition process.
Ma believes there are three benefits to this. “This technology speeds the return to earth through decomposition, it remediates toxins we accumulate over a lifetime, and it speeds nutrient delivery back to plants,” he said.
In her 2011 TED Talk, Lee touched on this, pointing out that “our bodies are filters and storehouses for environmental toxins.” Lee and Ma’s goal is to eliminate these toxins in a sustainable way.
Their method may seem a little morbid, but it has environmental advantages. Burial, the most popular choice for Americans, usually involves the use of a casket—which pulls from the earth’s wood and mineral resources—and toxic embalming fluid.
In the U.S. alone, 30 million board feet of casket wood is used annually for burials, according to Scientific American. Similarly, the U.S. uses 800,000 gallons of embalming fluid, traditionally used to preserve a body rather than allow it to decay, each year. The toxic fluid contains a known carcinogen—formaldehyde—that leaches into the soil following burial. Cremations aren’t much better, emitting 246,240 tons of carbon dioxide into the atmosphere per year from the U.S., says the Funeral Consumers Alliance.
The mushroom suit takes a load off more than just the environment. It will sell for about $999, said Ma—significantly less than the $7,181 the average funeral cost in 2014 and less than the $6,087 average expense of cremating a body.
Although the mushroom suit provides a cost-effective alternative, the goal is to do so without losing the beauty of the process. The suit itself is a work of art thanks to designers such as Daniel Silverstein, who has designed clothing for Jennifer Hudson and Kristen Bell.
“We still care a lot about the ceremony and fashion, so it can still be beautiful,” said Ma.
Ma, whose grandparents died last year, shared his personal experience with the funeral-planning process. “I was heavily involved in the logistics, and I kept thinking, ‘Oh, my God, I’m making a lot of terrible decisions as a businessperson, and at the same time, I’m so emotionally overwrought with what’s going on,’ ” he said.
Ma hopes the suit will help launch conversations about death and reshape the idea from “scary” to something everyone experiences.
“Our products really help people think about their deaths in congruence with how they live their lives. When people do that, they stand a chance to live life better,” he said.
“The Nightmare” by John Henry Fuseli is thought to be a depiction of sleep paralysis.
Before you are even fully awake, your heart is racing.
You wanted to take a brief “power nap,” not to fall into a deep slumber. Before you gather the nerve to look at the clock and see how much time you’ve wasted, you consider the schedule gymnastics you’ll have to perform now because of the sleep mishap. It’s not going to be pretty.
But when you look, only a few minutes have passed. All those dreams, the entire world your subconscious built, was erected and demolished in a relative blink of an eye.
This is a temporal quirk in the part of sleep known as hypnagogia, when the brain makes its clumsy transition between wakefulness and sleeping, when all sorts of weird stuff happens. It’s also a state of mind tied to other times when humans are on the precipice between the unconscious and the conscious—even life or death.
Sleeping Beauty thought she was just going to take a quick power nap.
So, what goes on during this eerie state? A 2015 investigation by Cambridge researchers explains the hallucinatory feeling of hypnagogia like so:
The complexity and intensity of hypnagogic imagery can range from vague and fleeting impressions to fully formed images or even hallucinated dreams, and the most common forms of hypnagogic images are visual, auditory, and bodily experiences. […] [O]ther types of hypnagogia may include awareness of sleep onset, distorted perception of space, and time, as well as linguistic alterations.
This process is not always benign. The hypnagogic state’s also responsible for the “invisible presence” felt during episodes of sleep paralysis, recently brought into the mainstream with the documentary The Nightmare. Its cousin “night terrors,” meanwhile, occurs in a deep REM phase of the sleep cycle.
Hypnagogia is also the state in which lucid dreaming, that moment when the dreamer becomes aware of the state they’re in and takes control of the wheel, can occur. In 1985, Stanford professor Stephen LaBerge published the first scholarly treatise, Lucid Dreaming, wherein he spends an entire chapter explaining the strangest quirk of lucid dreaming, the out-of-body experience:
A person having an OBE may for example find his sense of identity apparently associated with a second, non-physical body—a “soul,” “astral body,” “spirit,” or, to suggest a term having a certain charm, “out-of-body body” (OBB)! Equally, while “out-of-body”, one may entirely dispense with the inelegance of bodies of any sort, and experience oneself as a point of light or a freely mobile center of awareness.
Near-death experiences are often accompanied by hallucinations involving white lights, tunnels, and communing with the dead.
These OBEs are also a trait of another piece of neurological weirdness: Near-death experiences (NDE).
Defined in 1975 by Raymond Moody, NDEs are “any conscious perceptual experience which takes place during an event in which a person could very easily die or be killed, but nonetheless survives, and continues physical life.” That seems fairly straightforward but what actually is felt during these NDEs where things get freaky. There are white lights, and tunnels, and communing with the dead. But also among Moody’s list of 15 “common elements” that recur in adult NDEs are “hearing unusual noises” and “being ‘out of body’.” And there we have our overlap.
Lucid dreams, which occur in the hypnagogic state we all experience, occasionally features the feeling of being outside of one’s body. And near-death experiences feature these samefeelings of being outside of one’s body. So, is there a relationship between the two?
Kevin Nelson, professor of neurology at the University of Kentucky, believes so. In a 2011 interview with the Guardian, Nelson points towards a common element that links all near-death experiences together—the fact they’re occurring to a person that’s just almost died. That kind of stress can play havoc on one’s body, and brain. “If blood flow to the brain is threatened in some way one of the brain’s crisis reactions has to do with a consciousness switch,” Nelson told the Guardian. “What we found in subjects who’ve had near-death experience is that instead of moving smoothly from waking to REM consciousness, their brain switch is more likely to blend these two conscious states together.
In 2002, a laboratory in Switzerland was able to reproduce the feeling of an out-of-body experience using electrodes placed in the brain.
If Nelson is correct, and NDEs occur because of a short circuit in the brain, and we can know which area is short-circuiting, well, the effect can be replicated in the lab. And, it has. In 2002, Olaf Blanke at the Laboratory of Cognitive Neuroscience in Switzerland reproduced the feeling of OBEs by using specifically-placed electrodes to disrupt temporal pariental regions in the brains of study participants. Essentially, Blanke flipped a switch and the participant felt as if they were out of their body.
So, case closed? We found the component that can be tweaked and NDEs are somehow connected to our normal sleep cycle? Well, not entirely.
“All the evidence I’ve seen is that Kevin Nelson is wrong,” said David Hufford, professor at Penn State College of Medicine, who’s been studying sleep paralysis since the 1970s. “There is no significant connection between sleep paralysis and near-death experiences. For starters, phenomenologically they don’t look anything alike.”
What he means is that while some aspects of the two experiences may take part in the same area of the brain, there are enormous differences in the emotional content of each state. “Sleep paralysis is accompanied by a threatening figure in the room,” said Hufford. “They hear footsteps, it comes over, it presses on them, it makes them short of breath, stuff like that.” This is in pretty direct conflict with the quite pleasant feeling that comes after someone experiences NDE. (In fact, Moody’s list of 15 NDE elements also includes “feelings of peace and quiet,” “experiencing a realm of bewildered spirits,” and “elimination of fear of death.”)
Near-death experiences are actually often accompanied by pleasant feelings, such as “feelings of peace and quiet,” and “elimination of fear of death.”
Perhaps more damning is that various studies have shown there’s no correlation between the people who experience sleep paralysis and the people who have NDEs. If both events were caused by the same body processes, there should be some level of crossover in the people experiencing them. But, according to Hufford, there is none, which pokes holes in Nelson’s theory that NDEs being caused by a breakthrough from the sleep cycle.
To Hufford, suggesting a link between NDEs and sleep isn’t an inconsequential mistake, but rather a huge misstep with important ramifications. “I have a missionary zeal about this because the psychiatric stigma attached,” said Hufford. “It’s very important we start to have a more intelligent attitude towards NDEs.” It’s important, he continued, to not to just call people who claim to experience this “crazy” as a way of ignoring their stories. When it comes to pinpointing what is going on between conscious and unconscious states, humans can’t seem to fully wake up.
The database details criminality over 157 years until 1936, as well as chronicling the lives of some of the justice system’s more notorious enforcers
If death is the final taboo, it might not be for much longer. There has, in recent years, been increasing effort to promote conversations about death and dying, both in the home and in more public settings. For example, death cafes, first launched in Switzerland in 2004, have spread around the world, enabling people to speak about their fears over cake and coffee.
Our reluctance to talk about death is often taken as evidence that we are afraid, and therefore suppress thoughts about it. However, there is little direct evidence to support that we are. So what is a “normal” amount of death anxiety? And how does it manifest itself?
Experimenting with death
Judging by studies using questionnaires, we seem more bothered by the prospect of losing our loved ones than we do about dying ourselves. Such studies also show that we worry more about the dying process – the pain and loneliness involved, for example – than about the end of life itself. In general, when we are asked if we are afraid to die, most of us deny it, and report only mild levels of anxiety. The minority who report high levels of death anxiety are even considered psychologically abnormal – thanatophobic – and recommended for treatment.
On the other hand, our tendency to report only low levels of death anxiety might be a result of our reluctance to admit to our fear, to others and ourselves. Based on this hypothesis, social psychologists have, for almost 30 years now, examined the social and psychological effects of being confronted with our own mortality. In well over 200 experiments, individuals have been instructed to imagine themselves dying.
What’s worse: the death of a loved one or facing our own death?
The first study of this kind was conducted on US municipal court judges, who were asked to set bond for an alleged prostitute in a hypothetical scenario. On average, judges who were confronted with their mortality beforehand set a much higher bail than those who were were not confronted – $455 versus $50. Since then, many other effects have been found among groups including the general population in many different countries.
Besides making us more punitive, thinking about death also increases our nationalistic bias, makes us more prejudiced against other racial, religious and age groups, and leads to other such parochial attitudes. Taken together, these dozens of studies show that being reminded of death strengthens our ties to the groups we belong to, to the detriment of those who are different from us.
Reminders of death also affect our political andreligious beliefs in interesting ways. On the one hand, they polarise us: political liberals become more liberal while conservatives become more conservative. Similarly, religious people tend to assert their beliefs more fervently while nonreligious people disavow more.
On the other hand, these studies have also found that thinking about death tempts us all – religious or otherwise – towards more religious belief in subtle, perhaps unconscious ways. And when the reminder of death is sufficiently powerful and when participants are not mindful of their prior political commitments, liberals as well as conservatives tend to endorse conservative ideas and candidates. Some researchersclaim that this could explain the US political shift to the right after 9/11.
What do the results mean?
But why does the prospect of death make us more punitive, conservative and religious? According to many theorists,reminders of death compel us to seek immortality. Many religions offer literal immortality, but our secular affiliations – such as our nation states and ethnic groups – can provide symbolic immortality. These groups and their traditions are a part of who we are, and they outlive us. Defending our cultural norms can boost our sense of belonging and being more punitive against individuals who violate cultural norms – such as prostitutes – is symptom of this.
Consistent with this interpretation, researchers have also found that reminders of death increase our desire for fame and for children, both of which are commonly associated with symbolic immortality. It turns out that we do want to be immortalised through our work and our DNA.
Thinking about death makes us dream of being famous.
When asked, we do not seem, perhaps not even to ourselves, to fear death. Nor would we guess that thinking about death has such widespread effects on our social attitudes. But there are limits to our introspective powers. We are notoriously bad at predicting how we will feel or behave in some future scenario, and we are similarly bad at working out why we feel the way we do, or evenwhy we have behaved a certain way. So, whether we realise it or not, it seems that to bring death to the surface of our minds is to open Pandora’s box.
So what should we make of these new efforts to demystify death and dying through conversation? It is hard to say. Increasing death’s profile in our imaginations, private and public, might make us all more punitive and prejudiced, as the research found. But then perhaps we get these negative effects precisely because we are unaccustomed to thinking and talking about death.
In exposure therapy, carefully exposing patients to the source of their anxiety – an object, an animal, or even a memory – reduces their fear. In the same way, perhaps this most recent taboo-breaking trend will inoculate us psychologically, and make us more robust in the face of death.
Alex Janin
