The Boston-based Funeral Consumers Alliance of Eastern Massachusetts ― which has a lot of credibility because it is a non-profit, all-volunteer, educational consumer organization ― offers a nicely rhymed pamphlet titled, “Before I go, you should know.” And yes, it’s about a subject almost everyone tiptoes carefully around—our own demise.
Its subject, of course, is “everything” family and friends should know when planning a funeral. It also addresses the issue of prepaid funeral plans. Should you have one or not?
Pros and cons
There are arguments for it. Mainly made by representatives of the industry, such as the National Funeral Directors Association (NFDA). “You know what it’s going to cost. You are paying for your own funeral. So, you know what services you want, and that you’ll get them,” said Linda Earl, a spokesperson for NFDA and a funeral director with 38 years of experience.
There are other reasons as well. Pre-paying offers inflation protection. The cost will not go up. The money can go into an account only accessible on an individual’s death, available with a minimum of formalities.
Another important reason: sparing a family from hard choices during a difficult time.
“It also helps those who are left behind to grieve and to heal. They have so many decisions to make in a very short time period such as even finding a funeral home, and others,” Earl said.
Of course, there are disadvantages. Consumer groups cite them.
“We definitely suggest people not pay in advance but to plan in advance,” said Paula Chasan, membership secretary for the Funeral Consumers Alliance of Eastern Massachusetts. The organization cites other issues, such as funeral homes going out of business prior to a planned future funeral date, among other reasons. Instead, it recommends practices such as an interest-bearing bank savings account for a funeral in lieu of prior payments.
Family care used to be common
In the history of funerals in early day America, they almost always involved care by families. Most people died at home. All that changed dramatically during the Civil War when hundreds of thousands of men died at unexpected young ages, often far from home. Smaller funeral parlors emerged, followed by national companies. But there were some instances of consumer abuses, sometimes endured by relatives using poor judgment and distracted by their losses. Funeral expenses also mounted.
A recent cost figure for a standard funeral home service was set at $7,000 to $12,000. Customary services included embalming, caskets, viewing and service fees, among others. That figure did not even include costs for a cemetery, monument, marker and other expenses such as flowers.
The NFDA reported that the national median cost of a funeral with a viewing and burial in 2021 was about $7,848. NFDA median figures for a funeral with cremation: $6,971.
Due to cost and environmental considerations, cremation numbers last year in the U.S. were projected to be 57.5 percent, while the burial rate was 36.6 percent, according to NFDA’s 2021 “Cremation and Burial Report.”
Cremation, while costing less, also offers greater flexibility. Cremated remains may be buried or scattered at a family’s convenience. They may also be incorporated into various art forms, placed in coral reef balls or even shot into space. On the other hand, cremations at temperatures of up to 1700 degrees also create a variety of air pollutants.
The so-called “Green burial” has gained a significant toehold as another choice. It uses only biodegradable materials. There is no embalming. Instead, a body is placed in a biodegradable container, such as a cardboard container and placed directly into the earth rather than a concrete outer burial container. The practice helps protect land preservation and restoration. In fact, it goes back to the Civil War days as a common practice.
Funeral homes offer all types of services
“Times are changing,” says the website at Boston’s Casper Funeral & Cremation Services. “While full, traditional funerals will always be sought and available, more and more individuals and families are turning to pre-planning a combination of cremation and a meaningful celebration-of-life ‘service’ or an eco-friendly green burial.”
Owner Joe Casper’s facility is similar to others in offering all types of services, but he said cremation has been growing in popularity. He offers what is believed to be the lowest cremation price in the state: The “simplicity” service for $1395. “There are no other costs, and no hidden or other fees,” he said. It is illegal for funeral homes in Massachusetts to operate crematories, so the price also includes the use of licensed crematories in the state.
Planning for your own funeral to maintain control, get lower prices and not get cheated is not an idea expressed just by consumer groups. It’s almost a universal notion.
“More and more people today are choosing to pre-plan their own or a loved one’s funeral as an alternative to having others make the decisions for them,” said the National Funeral Directors Association on its web site.
But other consumer groups, such as the national Funeral Consumers Alliance, make the point that not paying beforehand is a good practice in part because of another reason: possible dishonest practices.
Jim Couchon, a trustee and vice president of the Funeral Consumers Alliance of Western Massachusetts, can cite various abuses, such as a Boston man whose pre-paid funeral cost several thousand dollars. When he died, the funeral home could find no record of it. But the issue was resolved when a cancelled check was found.
“No. that’s not common. But the family was upset about it. And you don’t want it to happen to you,” he said.
Most modern funeral practices don’t do much good for the planet. Manuela Callari takes a look at what happens, scientifically speaking, if nature is allowed to take its course after we die, and emerging options that soften our carbon footprint after our exit.
By MANUELA CALLARI
Overlooking the coastal sandstone cliffs south of Sydney’s CBD, gravestones in Waverley Cemetery stand like sentinels, aligned like a military parade. A Yulan magnolia grows out of the grave of a post World War II Italian migrant, at rest since 7 May 1977. It’s as if it is drawing its sustenance from the deceased.
Life depends on death – a circle that has been going on forever. Saplings grow out of rotting trees, and marine carcasses provide a bounty of nutrients for deep water organisms.
When creatures die, they decompose and become the nutrients that other life forms need to flourish. But most humans end up embalmed and buried, or cremated. Are the rituals we have created messing with this cycle of life?
Some think so. “Green death” trends have emerged in the funeral industry to respond to people’s growing concerns around the ecological burden of traditional burial practices.
The science of human decomposition
First, what happens when a body decomposes out in the open? A little warning here is due: this is not a story for the squeamish. When you die, your heart no longer pumps blood through your veins. Gravity draws the blood towards the ground, where it settles. Your lungs stop functioning, which means you’re not breathing in oxygen or expelling carbon dioxide. As carbon dioxide builds up and dissolves in the pooling blood, it begins to form carbonic acid, which dissociates into bicarbonate and hydrogen ions, making the blood acidic.
Simultaneously, enzymes involved in your cells’ metabolism throughout life begin to digest the cells’ membrane, which, combined with a decreased blood pH, causes cells to rupture and spill out their guts. “Everything starts to break apart,” says Dr Maiken Ueland, a researcher at the Centre for Forensic Science and the deputy director of the Australian Facility for Taphonomic Experimental Research (AFTER) at the University of Technology Sydney.
When your cells begin to crumble, they release nutrients that the human microbiome – all the bacteria, fungi and viruses and other microbiota living in you – love to gobble up, literally eating your body from inside out.
Your microbiome helps digest food and keeps your immune system in good shape throughout life. But when you’re dead, your immune system shuts down, and all of a sudden, trillions of microorganisms have free rein.
The microbiota break down carbohydrates, proteins and lipids, producing liquids and volatile organic compounds as byproducts. These build up inside your abdomen and make you look bloated. After three days of decomposition, these compounds release, causing a distinctive “death” smell. Carbon dioxide, methane, and ammonia gasses are among the contributors. Hydrogen sulphide, also present in farts when you’re alive, plays a critical role. But putrescine and cadaverine, which are formed from the breakdown of amino acids, are the biggest culprits.
Ueland, who studies forensic taphonomy – the process of corpse decomposition – says the gasses emitted from the body as it breaks down attract more fungi, bacteria, worms, insects and scavengers to the banquet. A decomposing body creates a remarkably complex ecosystem, which taphonomers call the necrobiome.
Blowflies are generally early comers. They start to lay eggs from which maggots hatch within 24 hours. One blowfly can lay about 250 eggs, so if a few hundred blowflies lay eggs, there are soon tens of thousands of hungry maggots crawling on your body, ready to contribute to the decomposition process. Larvae consume the soft tissue first, says Ueland. Then the skin falls apart, and all that is left is your skeleton, which will continue to break down for decades.
As the feast goes on, more nutrients are released into the surrounding environment. For every kilogram of dry body mass, a human body naturally decomposing will eventually release 32g of nitrogen, 10g of phosphorus, 4g of potassium, and 1g of magnesium. So an average 70kg live human body, which consists of 50–75% of dry body mass, would release roughly 1,400g of nitrogen, 434g of phosphorus, 174g of potassium and 43g of magnesium after death.
Taphonomers call this puddle of nutrients around a body “the cadaver decomposition island”. Initially, some of the vegetation in this island dies off, possibly because of nitrogen toxicity. But as the nutrients are further digested by bacteria within the island they act as fertilisers, transforming the island into a vegetation oasis.
Death 1.0: the industrial age
In a typical burial, the body is embalmed and put in a coffin made of oak or elm. The wooden capsule is buried about two metres underground, possibly under a slab of concrete. Formaldehyde is often used as an embalming fluid. It bonds proteins and DNA in the cells together so tightly that the microbiome can’t break it down, preventing tissue from decomposing for decades.
Even if a body isn’t embalmed, the coffin in which it lies hinders the natural decomposition process, and the nutrients released are not easily accessible to the microorganisms and scavengers in the soil.
If you’re not keen on burial, you can always choose to be cremated. Since the 1950s, cremation has become more popular than burial, with about 70% of Australians opting for it. But cremation, too, cuts the circle of life and death short. It transforms a body into mainly three things: ash, water vapour and a lot of carbon dioxide. Not only will cremated bodies not fertilise any vegetation oases, burning them up is far from sustainable.
Aquamation is the fire-free alternative to cremation. All that’s left is a tea-like solution that’s good for plants
According to the Department of the Environment and Energy, a modern cremator uses the equivalent of 40 litres of petrol for an average body. An older crematorium furnace can consume up to twice that amount of fuel.
Cremating a dead body releases about 50kg of carbon dioxide and a bunch of toxins into the atmosphere. And the carbon footprint doesn’t end at the crematorium door.
“What about the 100 people driving to the crematorium, then driving back to Uncle Bob’s house to have a barbecue?” says Kevin Hartley, founder and director of Earth Funeral. “And what about all the catering and all the energy and bits that go into it?”
Hartley estimates that at a typical, small-size cremation and funeral, the event can release up to one tonne of carbon dioxide – the equivalent of driving a petrol car for six months. Fifty trees have to grow for one year to capture just one tonne of carbon dioxide emissions.
Death 2.0: the eco-age
An interest in pared-down, eco-friendly, end-of-life options has grown, ranging from biodegradable pods that turn a body into a tree, to mushroom burial suits that devour dead tissues.
“There’s a whole suite of alternative technologies in this space,” says Dr Hannah Gould, a cultural anthropologist with the DeathTech Research Team at the University of Melbourne. “But alkaline hydrolysis and natural organic reduction are the major alternatives that have legs.”
Alkaline hydrolysis, also known by the catchier name of “aquamation”, is the fire-free alternative to cremation. It produces less than 10% of the carbon emissions of traditional cremation, doesn’t release toxins, and generates nutrient-rich water.
Give and take: Eco-friendly after death practises that give back are the subject of many start-ups. The Capsula Mundi, above, is an Italian-designed biodegradable casket above which you can plant, and nourish, a young tree. Memory Gardens, such as this one in Le Bono, France, offer the option of depositing ashes under different trees in a headstone-free green space.
The body is placed in a pressure vessel filled with an alkaline water solution of potassium hydroxide or sodium hydroxide or a combination of both, with a pH of 14. The solution is stirred and heated to about 160°C at high pressure to prevent boiling.
In a few hours, the body breaks down into its chemical components. All that’s left is a tea-like solution that is very good for plants, so family can take home the sediment of minerals for scattering.
“The environmental footprint of alkaline hydrolysis is much less than cremation and much, much, less than conventional burial in a graveyard,” says Professor Michael Arnold, a historian and philosopher with the DeathTech Research Team.
According to a report by the Netherlands Organisation for Applied Scientific Research (TNO), the estimated environmental cost for disposal of the dead is about $102 for a burial, $77 for cremation, and $4.15 for alkaline hydrolysis. “It’s a huge factor,” says Arnold.
Aquamation is legal in Australia but not widely available. There are only a handful of companies that offer the service, and, Arnold says, the practice remains little known by most. It was recently in the spotlight after the death of South African archbishop Desmond Tutu, who requested his remains be aquamated. Arnold hopes Tutu’s choice will increase the practice’s popularity.
The other alternative is natural organic reduction, or human composting. The body is placed into a vessel with a mix of soil, wood chips, straw and alfalfa. Microbial activity stimulates decomposition. Within about four weeks, the result is around 760 litres of humus. Family members are welcome to keep some of it; the rest is used as a fertiliser. The world’s first human composting company opened its doors in Seattle, US, at the end of 2020 and has since expanded to four states, but human composting isn’t yet legal in Australia.
The regulatory approval path of a new way to dispose of corpses is tedious. But appealing to the mass market remains the biggest challenge – eco-friendly body disposal is still a niche market.
“People who might want to pick these options tend to be those who are pretty concerned about the environment, who are into sustainability, alternative lifestyle, are a bit hippie,” says Gould. “But there is also a growing cultural desire to return nutrients to the earth.”
Arnold agrees. “A lot of people think that the body is something to be disposed of without much fuss, and cremation is appealing for that reason,” he says. “A smaller group of people think of the body as a resource rather than a waste – a resource that can and should be utilised by other living beings.”
In recent years, natural burial grounds have gained some popularity. Here, the body is buried without embalming in the topsoil, in a softwood or cardboard coffin or a shroud. Usually, there is no gravestone or headstone. Only about 2% of people opt for a natural burial.
Restoration burial grounds
Hartley had worked in funeral services for 15 years when someone asked what his plans were for his body after death. “Being reasonably young, I hadn’t really thought about it,” he says.
It was then that he began to ponder the environmental impact of the furnace he
had operated for so many years, and began to question whether that was indeed what he wanted his final act to be.
Hartley began to contemplate taking natural burial to the next level. “Restoration burial grounds is the term that we favour,” he says.
His not-for-profit organisation plans to convert pieces of distressed land, such as overused farmland on the edges of cities, to burial grounds that offset the cost of burial by “multiple times”.
The bodies will nourish and fertilise the barren land, restoring the native Australian bush. That, in turn, will attract native wildlife and, eventually, the land will be managed like a national park.
Regular natural burial grounds might offset the carbon cost of a burial, but being carbon neutral is no longer enough, Hartley says.
“We put the Earth bank account into deficit,” he says. “We are way overdrawn. We want to put back into the planet.
“Death is part of life. Everything is cyclic. We’re interested in the restoration of the nexus between death and life for people and have a genuine return to the earth.”
It’s a plan that might revolutionise the look of Australian cemeteries – rows of gravestones giving way to Australian native forests buzzing with wildlife.
Fungi are not fussy diners. Cardboard, plastic, jet fuel and asbestos — fungi will devour them all. In 2007, scientists studying Chernobyl’s blighted landscape discovered a fungus capable of “eating” radiation. It almost goes without saying, then, that fungi have little trouble decomposing us.
Dutch inventor Bob Hendrikx is harnessing the power of fungi by using mycelium — vast webs of fungal threads that normally live underground — as an alternative to traditional wooden coffins. His environmentally friendly “living coffin,” he says, is not only carbon negative to grow, but decomposes in six weeks, rather than the 20 years it can take for a regular wooden coffin. The coffin also gets to work decomposing the body, speeding up the process by which nature can absorb the nutrients of the deceased.
Hendrikx’s company Loop is not the first to hitch itself to the eco-hearse. Cremated human remains can be placed in pods to grow trees or cast into artificial coral reefs, while coffins made from wicker, macramé and cardboard are all on the market. Woodland burials, where coffins and clothing are made from all-natural materials, are also experiencing a resurgence. And when actor Luke Perry died in 2019 he was buried in a “mushroom suit” designed to help decompose his body. But using mycelium to enclose the body in a “living coffin” is a novel approach.
The motivation is simple: some funeral practices are bad for the environment. In the US alone over 4 million gallons of embalming fluid are used every year for burials, according to the non-profit Green Burial Council. Embalming fluid contains toxic ingredients such as formaldehyde, which can leach into the ground.
Cremation has its own issues, releasing considerable amounts of carbon into the atmosphere and possibly heavy metals if present in the body (the US Environmental Protection Agency calculated that nearly 2 tons of mercury, found in dental fillings, were emitted by human cremations in 2014).
“What really frustrates me is that when I die, I’m polluting the Earth. I’m waste,” says Hendrikx. He describes the body as a “walking trash bin of 219 chemicals” even before factoring in the metals, wood and glue typically used in coffins.
“Our current burial processes lead to material depletion, soil pollution and CO2 emissions,” he adds. “We created a super-industrial process for one of the most natural processes on Earth.”
But given the right treatment, the body becomes “a beautiful bag of compost.” Mushrooms, Hendrikx says, “are known as the world’s largest recycler,” turning dead organic matter into new plant life. “Why are we not using this?”
Loop’s “Living Cocoon” is comprised of lab-cultivated mycelium, woodchips and secret ingredients, placed in a mold and grown into a coffin shape over the course of a week. Once completed, moss — full of microorganisms — is packed into the bottom, onto which the body is laid. Once the structure comes in contact with damp soil the mycelium comes to life and the process begins.
Loop has partnered with biomaterials pioneers Ecovative to test the product, which Hendrikx says will decompose in 45 days. “It’s not gone,” he adds, “because it’s then working on your body.” He says calculations made by Loop with expert input indicate a corpse will fully decompose in two to three years.
The coffin, which is manufactured in Delft, is on sale for €1,495 ($1,700). Joerg Vieweg, an owner of funeral homes in Germany, is one of Hendrikx’s customers. Vieweg says the mycelium coffin is “a good example of how to achieve something ecologically with little change in the tradition of farewell.”
“(It) does not fundamentally change the process and traditions (of preparing a body for burial),” he adds, which makes burial in a mycelium coffin more socially acceptable.
To date around 100 burials have been conducted with the Living Cocoon in the Netherlands, Germany and Belgium, says Hendrikx. He says laws in some European countries are more favorable for the coffin than others. “It’s a super-conservative market,” he adds, “the same as it’s ever been.”
“The challenge at this moment is how can we convince families to organize a sustainable funeral?” she adds. “Consumers are not aware of (sustainable funeral options), because the problem is, how many times do you organize a funeral? There’s only once or twice in your life that you’re responsible.”
Van Haastert says funeral companies in the Netherlands are now training their employees to discuss climate-neutral options with bereaved families, and she hopes new legislative guidelines will be introduced for alternative funerals.
While she describes Loop’s product as “niche” at present, she speculates that “within five years (people) will ask more for these kinds of coffins.”
Hendrikx believes he’s found a positive solution, and as Loop looks to expand, it aims to create coffins using fungi samples local to their final destination to ensure they have optimal environmental impact. “Instead of doing a bad thing, or less bad thing (after death), you can actually do something good,” he says, making the case for his invention.
Vieweg believes the funeral industry is “facing a tremendous change of paradigm.”
“People are creative and look(ing) for sustainable solutions to protect our environment,” she says. “The rituals that have been lived up to now will also survive and new ones will develop. To experience this process is exciting and challenging.”
Desiree Celeste works in Denver as a death companion focused on helping the LGBTQ+ community process death and grief.
by Corbett Stevenson
When Desiree Celeste begins to feel emotional while discussing the death of their grandmother, they refuse to apologize — instead, they make space to explore and feel the depths of their grief.
“I’m not sorry, actually. I will be mourning her for the rest of my life,” said Celeste, who uses they/them pronouns.
Celeste said that their grandma “always was and always will be” their best friend. When she died after a three year stay in hospice, the emotional care Celeste and their family received was lacking.
“Her death almost killed me, that’s how deep my grief was,” they said. “Don’t get me wrong, the hospice workers were amazing, they did a great job. But I was still left feeling like I needed more. I needed someone outside of that group that could hold space for me and my grief.”
Now, years later, Celeste has built themself into the companion they sorely needed in those dark moments.
Celeste works as a death companion. Also known as a death doula or a death midwife, death companions dedicate themselves to supporting people as they experience grief and death. They can help make funeral arrangements, answer questions about death and dying, organize euthanasia for pets, help process grief years after an event and much more.
Celeste’s trusty notebook, covered in stickers discussing death and dying.
Although Celeste officially started their work in 2021, they said they’ve been doing some forms of death companionship for most of their life.
“At pet stores I used to take home animals that smelled like death … that I knew would die. I took them home so I could care for them and make sure they didn’t die alone,” they said.
But everything truly came to a head when Celeste lost their grandmother. On top of the grief of losing their best friend, they never had a chance to come out to her as nonbinary, which added a unique and terrible pain to Celeste’s experience.
“I never came out to my grandma, she never knew who I really was,” they said.
Influenced by that pain, Celeste is a death companion focused on providing services to other LGBTQ+ individuals, for whom death and grief can be exceptionally difficult.
“I worked with a client once to help them organize an at-home euthanasia for their pet. They identified as transgender, and were terrified of reaching out to veterinarians because of their fear of being mis-gendered,” Celeste said. “Talking to the vet, picking up the ashes and even getting the body cremated are all opportunities where they could have been mis-gendered, so I acted as a barrier and shielded them from that pain.”
In another instance, Celeste worked with another transgender client who was the primary caregiver for an individual who had died. Living in a conservative and rural area, it was unsafe for the client to come out, and so they would be facing funeral directors, doctors and other professionals as someone they weren’t.
“When someone is experiencing grief, they’re already so fragile. It’s not fair to have to hide who you are while going through that, so I was there to offer emotional support and be someone who knew what was really going on,” they said. “It’s really important to have someone to explore those feelings with without hiding anything.”
A promotional flyer created for Celeste’s Queer Grief Gatherings.
One of the most important aspects of their work is the unique variety of care Celeste offers as a death companion.
“The important thing to remember is that it’s not either/or — you can work with hospice and social workers and still need the support of a death companion,” they said. “When people are experiencing the anxiety that comes with death, they need to feel safe. I’m here to offer a vast and flexible variety of services to help with that.”
Starting in February, Celeste began to offer virtual processing spaces for those who identify as queer. The goal of those spaces, they said, is to offer space and time to talk about death and grief in all its forms.
“When I started my work, I wasn’t focusing on queer clients, but over time I think my clients began to see a piece of themselves in me, and they just started to gravitate towards me.” they said. “A death companion’s care is truly unique, I strive to meet people wherever they’re at.”
Scientists may finally be in a position to answer that question after they recorded the brain waves of a patient as her life ended.
Crucially, they didn’t set out to capture this data – instead it ocurred by happenstance.
Researchers in the United States were running an electroencephalogram (EEG) on an 87-year-old man who suffered from epilepsy.
An EEG measures the electrical activity of your brain and, in this case, was being used to detect the onset of seizures.
However, during the treatment, the patient had a heart attack and died.
As such, the scientists were able to record 15 minutes of brain activity around his death. And what they found was extremely interesting.
Focusing on the 30 seconds either side of the moment the patient’s heart stopped beating, they detected an increase in brain waves known as gamma oscillations.
These waves are also involved in activities such as meditation, memory retrieval and dreaming.
We can’t say for sure whether dying people really do see their life flash before their eyes, but this particualar study seems to support the idea.
And the scientists say the brain is capable of co-ordinated activity for a short period even after the blood stops flowing through it.
‘Through generating oscillations involved in memory retrieval, the brain may be playing a last recall of important life events just before we die, similar to the ones reported in near-death experiences,’ said Dr. Ajmal Zemmar, lead author of the study, which was published in the journal Frontiers in Ageing Neuroscience.
‘These findings challenge our understanding of when exactly life ends and generate important subsequent questions, such as those related to the timing of organ donation.’
In the study, the researchers point out that similar changes in brainwaves have been detected in rats at the time of death.
However, this is the first time it’s been seen in a human.
Dr. Zemmar and his team say that further research needs to be done before drawing any definite conclusions.
This study arises from data relating to just a single case study. And the patient’s brain had already been injured and was showing unusual activity related to epilepsy.
It’s not clear if the same results would occur in a different person’s brain at the time of death.
‘Something we may learn from this research is: although our loved ones have their eyes closed and are ready to leave us to rest, their brains may be replaying some of the nicest moments they experienced in their lives,’ Dr. Zemmar said.
A combination of journalistic curiosity and advancing years prompts me to read obituaries regularly. I routinely check for ages and causes of death that can help inform what I write about and how I live.
Increasingly, I’ve noted in published reports that people are often said to die of “complications of” some disease, rather than the disease itself.
What, I wondered, does that mean? How is it recorded on death certificates? And does it result in accurate mortality statistics needed for assigning priorities for medical research and allocating resources?
I looked up the complications of Parkinson’s and Alzheimer’s diseases. Someone with Parkinson’s disease may have poor balance and die from a fall, for example, but Parkinson’s is actually the underlying cause of the death. Similarly, people with Alzheimer’s disease often have difficulty swallowing and may accidentally inhale food and develop a fatal pneumonia; such secondary infections are listed as the cause of death for as many as two-thirds of these patients.
The result can be seriously misleading information, said Dr. James Gill, the chief medical examiner for the state of Connecticut. While pneumonia may be the proximate cause of death, Alzheimer’s disease, which is why the patient developed pneumonia in the first place, is the “specific underlying cause that started the chain of events and should be listed as the cause of death,” he said.
In fact, one study from 2014 suggested that the real death rate from Alzheimer’s in 2010 may have been more about six times higher than the number of deaths reported to the Centers for Disease Control and Prevention. Likewise, if someone with Covid-19 develops pneumonia and dies, their death certificate might say that pneumonia was the cause of death, but in reality it was a coronavirus infection.
I asked Dr. Gill, who heads the College of American Pathologists Forensic Pathology Committee, why this matters. “In order to prevent deaths, we want to know what’s causing them, which influences medical practice and the awarding of research grants,” he said. “If many dementia deaths are hidden, the disease is not getting enough funding.”
More dramatically, Dr. Gill added, “Having accurate death certificates saves lives. It enables us to identify new and trending diseases and take appropriate action.” If someone is living or working in a building with a poorly installed or maintained furnace, for instance, they may be exposed to toxic levels of carbon monoxide that could eventually cause fatal cardiac and respiratory failure. The cause of death might be recorded as cardiac arrest, but in fact was a result of carbon monoxide poisoning, and the presence of the faulty appliance would likely be missed and could result in further casualties.
In a research review published in the magazine Today’s Geriatric Medicine, Dr. Emily Carter, a geriatrician affiliated with the Maine Medical Center, and co-authors noted that the data submitted on death certificates can affect families with regard to life insurance, estate settlement, genetic risk factors and finding closure. They estimate that major errors, like incorrect cause or manner of death, occur in 33 to 40 percent of death certificates that are completed at academic institutions like their own in the United States.
An analysis of death certificates at their own institution found that cardiac or respiratory arrest were incorrectly entered as the immediate cause of death on 11 of the 50 documents they reviewed. As Dr. Gill said, “Everyone who dies, dies of cardiopulmonary arrest. The critical question is: Why did this happen? Let’s say someone dies of a stomach hemorrhage. What caused it? Stomach cancer, an ulcer or what?”
There are many reasons for the high rate of inaccurate or incomplete death certificates, starting with the meager attention paid to the subject in medical school and the hectic pace in many medical settings. Speed is sometimes dictated by the need to release a body to a funeral home for burial or cremation.
The C.D.C. has estimated that 20 to 30 percent of death certificates, though not necessarily inaccurate, “have issues with completeness.” The agency stated that heavy workloads, insufficient information about a death or inadequate training can result in death certificates that are incomplete or inaccurate.
Furthermore, many deaths are certified by coroners, who are elected or appointed to their positions and may have bachelor’s degrees in forensic science, but are usually not doctors. They can be subject to political or family influence and may fail, for example, to list opioid overdose as a cause of death. Even when death certificates are completed by medical examiners, who are usually doctors, they may not be trained in forensic pathology and could miss the real cause of death. A death following a fall, for example, might have been accidental, or it could have resulted from an underlying disease or even homicide.
According to a blog post from Womble Bond Dickinson, a trans-Atlantic law firm with headquarters in London, “the death certificate may be critical in a lawsuit” to help determine “the nature of the death,” factors that contributed to it, when it occurred and illnesses that may have played a role.
If the death was the result of a medical illness, the death certificate is usually completed by the physician in charge, Dr. Carter and her colleagues wrote in their review. However, they emphasized, a medical examiner should certify all other causes, including deaths related to hip fracture which could have resulted from an accident, and deaths related to a history of malicious injury that could be a homicide.
Unfortunately, despite what you may see in films and on TV, autopsies today are performed less and less often. Families often have to pay for them out of pocket. Between the high cost of autopsies and the increasingly limited resources to do them, they have become a dying breed.
Families can often benefit from knowing the real cause of a relative’s or housemate’s death. Might there be a payout from life insurance? Is there a home problem, like a slippery floor, lack of grab bars in the bathroom or a faulty furnace, that needs correction? Is there an inherited medical condition that can be mitigated to avert further casualties? Could malpractice have caused or contributed to the death?
If a death certificate contains errors that warrant correction, the sooner that’s done the better. In New York State, the funeral firm or medical certifier can usually help with a correction request that’s made within six months of the death. Beyond six months, you would have to fill out an application for a correction.
As an end-of-life therapist and researcher, I have long known that American culture has an uneasy relationship with death. We have been taught to “fear” death and dying. Fitness regimens, diets, and cosmetic procedures tout themselves as being able to “turn back the clock.” Medicine is even more uncomfortable with life’s end: Beating death is often presented as the ultimate goal. Aggressive measures to prolong life are viewed as a testament to our love for another person.
This relentless effort to fend off death is confounding when one considers that opinion polls consistently find that the majority of Americans believe in a benevolent afterlife. It would appear that the public interest in the mysteries that surround life’s end is far more extensive than our institutions would suggest.
Why we don’t feel comfortable discussing shared death experiences.
Much of my work centers on the transition from life to death, specifically “shared death experiences” where the living report a connection with the deceased around the time of their death. I’ve overwhelmingly found that this connection involves a clear sense that their loved one has moved on to a better place. In more than 50% of the cases that I have studied, experiencers even report accompanying their friend or loved one part way on their journey out of earthly life.
Knowledge of this transition space is an open secret in palliative and hospice care. We know that many terminally ill patients also report being aware of or seeing deceased family members, friends, and even pets, in the room with them, coming to help usher them out of this world. Some shared death experiencers also see or sense these figures as well.
Yet, again and again, shared death experiencers tell me that they feel uneasy discussing this subject with their health care and spiritual care providers. Their concern is valid, as one study found that 80% of patients who had sensed the presence of a deceased and shared it with their therapist felt dissatisfied with their counselors’ responses. They either did not feel understood, or they felt dismissed.
It wasn’t always this way.
One of the earliest written works on end-of-life care is the medieval text Ars Moriendi or “Art of Dying,” which was utilized in Catholic monasteries in Europe. Not only does it contain information on prayers, music, and pain remedies, as well as guidance on managing mental and emotional distress among the dying, but it is surprisingly ecumenical, drawing guidance from Catholic, Celtic, Jewish, and even Islamic traditions. Its underlying message is that dying is a spiritual experience and that it is possible to die well and be comforted. However, in our own era, there has been a strong reluctance to discuss what makes a good death or to openly explore what happens to us when we die.
In our own era, there has been a strong reluctance to discuss what makes a good death.
Speaking of her own shared death experience, Stephanie, a woman in Washington, D.C., whose husband died of aggressive cancer, recalled traveling with him into an incredibly bright, white light. She said, “There was no pain, no hurt. It was peaceful,” adding, “It felt as if I were going back to something I already knew.” But her own clergy shut down any conversation, and “that deflated me terribly,” she said. Finally, an oncologist told her that he’d had a similar experience. He told her this, however, after closing the office door and stating he would never share his experience with anyone else.
I believe that these hushed discussions could be the very things we need to help both the dying and the bereaved. Listening to and examining stories of individuals who have had shared death experiences can offer us another framework in which to process and accept death.
Consider the story of Carl, a California man whose father died of heart failure in Massachusetts. He experienced an overpowering sensation of being next to his father, saying “I could feel it in my bones and my cells that my dad was there with me.” While the experience did not end his grief, it changed his perspective. “I miss my dad,” he told me, adding, “and I wish I could call him up and be with him and spend time with him. I grieved and was sad, but it doesn’t feel like a tragedy. It feels like he is in the place he needs to be.”
Indeed, of the nearly 1,000 cases I have studied, 87% of the people interviewed report that their experience has convinced them that there is a benevolent afterlife. Nearly 70% said their shared death experience has positively affected their grief, and more than 50% said that it has removed their own fears around death and dying.
The takeaway.
In the last two years, the pandemic has resulted in a wave of death among people we know and love. Perhaps now, together, we can start a new conversation—one that is willing to include the voices of shared death experiencers. With their heartwarming stories, we may be able to transform our relationship with death from one of resistance and fear to that of acceptance, ease, and wonder of this great mystery that we will all one day embark on.
