Knowing how to communicate about death gives us the language to discuss end-of-life topics.
By Deb Rawlings, Christine Sanderson, Deborah Parker, Jennifer Tieman and Lauren Miller-Lewis
[T]alking about death and dying is taboo in many parts of the world.
So it’s no wonder many people avoid talking about it. Or they struggle to find the right words.
Whereas once, we were more comfortable talking about death, now we have become creative in avoiding talking about it.
We resort to euphemisms (alternative words that are softer or less direct) to soften the blow.
For instance, we talk about people “passing” or “gone” rather than they’ve died or are dead, just two examples from a rich history and range of euphemisms we discovered in our research.
What we did and what we found
We ran an online course, open to anyone around the world, on death and dying.
The aim was to open conversations about the topic, and to promote understanding about death as a natural part of life.
Over two years, we asked 3,116 participants from 39 countries about how they talked about death and dying.
They told us of alternative words or phrases to describe death instead of the words “death” or “dead”.
They volunteered varied, often humorous alternatives such as: “wrong side of the grass”, “taking a dirt nap”, “worm food”, “cashed in their chips” and “staring at the lid”.
But the most widely used euphemism was “gone”. Variants of “passed” were also very popular, like “passed away”, “passed over” and “passed on”.
Some of the euphemisms we found for death and dying. The larger the print, the more common they were.
There were also historical phrases that still make sense today, such as: “shuffled off” or “shuffled off this mortal coil,” from Shakespeare’s Hamlet (published early 1600s); “six feet under” (from around 1665, referring to how deep plague victims needed to be buried); and “promoted to glory” (used by the Salvation Army since the 19th century).
One common Australianism was “carked it” (also spelled “karked it”), a phrase that confused participants from other countries.
Some participants said euphemisms were acceptable if it was culturally inappropriate to be more direct.
This was particularly so for Aboriginal and Torres Strait Islander participants, who preferred “finishing up” and “passed away”.
People mainly said they used euphemisms because the words “dead” or “dying” could upset people or were too harsh.
Some participants said they had heard many euphemisms, but wouldn’t dream of using some, for instance “kicked the bucket”, for fear of causing offence.
Most participants said they speak openly about death and dying but could understand why others don’t.
Over two-thirds of participants were health professionals, and while many of them were comfortable talking in plain language, they often used the phrase “passed away” in some situations rather than “died”.
Many participants use euphemisms when others do, and are guided by them in conversation.
Is this a problem?
Does it really matter if people use such euphemisms? Not always.
But sometimes euphemisms can lead to misunderstandings and confusion. Think of the commonly used “gone”.
One participant talked of an aunt who was waiting to hear about the health of her husband.
The aunt received a phone call telling her that her husband had “gone” so she asked which nursing home he was transferred to.
The caller had the awkward task of clarifying her husband had died.
Then there’s the word “lost”. One participant received a phone call from a friend who had “lost” her mum:
I was confused and said, “Why? Where did she go? How can she be lost?
Other participants talked of receiving condolences such as “I’m sorry you have lost your son,” only to wonder whether they should feel careless in misplacing him.
Communicating about death and dying is important
Euphemisms have their place. But being able to talk openly (and clearly) about death and dying is important as it helps normalise death and avoids confusion.
If health professionals use euphemisms, they need to consider whether patients really understand what they’re trying to say.
Professionals arrived to do the job they were sent to do – take bloods, give drugs, request a hospital bed at home. They didn’t take the time to understand that what Dad wanted most was to be outside, to feel the sun, wind and rain on his face
When it comes to end of life care, we talk about dying. But in my experience, care at the end of life should not be not about death – it should be about life.
My Dad was a man full of wonder for the world. He loved nothing more than being outside, on a mountain bike or with a camera in his hand. He preferred to have a few, meaningful and close friendships than a wide group of acquaintances. He didn’t like lie-ins, or mayonnaise. He had blue eyes, and a particularly aggressive form of colon cancer that killed him within three and a half months of diagnosis, aged 57.
Cancer car-crashed its way into all of our lives, and following in its wake were a merry-band of professionals ostensibly there to care for him. The arrival of new people at our doorstep was relentless. Suddenly, my father, a man who invested deeply in knowing and understanding people, was surrounded by people who didn’t know him at all. This was clear from the first of many district nurse visits to our home. The nurse didn’t know how recently and rudely cancer had come into our lives. “I guess you’ve been fighting this for a good while,” she said. She talked about her grandson’s visit the weekend before. She didn’t know how much Dad wanted to have grandchildren.
Professionals arrived to do the job they were sent to do – take bloods, give drugs, request a hospital bed at home. They didn’t take the time to understand that what Dad wanted most was to be outside, to feel the sun, wind and rain on his face. They told us they’d visit sometime the next day. And so we waited. And Dad lost another precious opportunity to be out in the world he didn’t want to leave.
Suddenly, my strong, capable, energetic family were paralysed in a system that we didn’t understand, and that didn’t understand us. We had to wait for information, to fire fight the latest deterioration, and desperately live out the time we had left once the calls and the visits were done.
After my Dad died, I began to work on a programme to improve end of life care in South London. When it comes to improving end of life care, calls are repeatedly made for more palliative care services, for better access to pain control, for better planning. All of these help – no-one should die in pain, in a place they did not choose, and without the support they need.
But the end of life is not just about dying. It is about living well, right up until the end. And throwing more professionals at “the problem” of dying will not enable us to die well (nor do we have the resources to do so). We must start with what it means to live well – for my Dad, to be outside, with the people he loved to share his life with, reflecting on the wonder of a life well lived and the pain of a life lost too soon.
None of this is expensive to provide. But it requires fundamentally reframing what we understand care at the end of life to be.
Caring for people at the end of life means enabling people to live out their final days as they wish, helping them to reflect on the life that they’ve lived, and supporting them with the emotional and physical challenges that dying forces us to confront. Determining what this care looks like for each individual, and how it is provided, need not be led exclusively by professionals. In fact, it can and should be a partnership with our families, friends and neighbours.
As the power of medicine to extend and protect life advances year on year, we’ve handed responsibility for guarding against death to medical professionals. So too have we asked these professionals to “own” dying – to set the agenda about what end of life care looks and feels like, to lead the planning and choices we make, to initiate conversations, and even to make judgements about the best course of action. This expectation is unfair on those professionals, on those that are dying, and those that love them. Death is not simply a medical phenomenon – it is a social and emotional one, and that balance should be reflected in how we collectively set the agenda for what shape end of life care takes.
An army of professionals cannot meet all the needs of the dying and the bereaved. Professionals must share their knowledge with the loved ones that want to care, and we must all be courageous and upskilled in supporting our friends, families and neighbours, in death as in life. Our society and our health service must recognise the role we can, and must, all play in supporting people that are dying to live well, right until the end.
[P]HIL is lying in his hospice bed. There are tubes in his nose, delivering oxygen to his lungs.
He is attached to a monitoring machine, a beloved rug covering his now-frail body.
It is hard for him to lift his head from his pillow. Aged in his 60s, he is dying of cancer.
His life is no longer measured in milestones. Or years lived. Or career achievements. His life is now measured in days.
But his hospital room – inside the 16-bed Mary Potter Hospice in North Adelaide – is not filled with the gloom of impending death, but rather a celebration of life. Because every day, every hour, Phil is still living.
This is palliative care: where life and death swirl around each other in a strange and powerful dance.
But while death has always been a part of the human experience, palliative care – specialist care for the dying – is a relatively new concept.
Palliative care began in the United Kingdom as part of the hospice movement in the 1960s and is now widely used outside of traditional hospices, offered also in hospitals, nursing homes and private houses.
As Palliative Care SA explains of its purpose: “Living well is a daily choice, dying well takes planning”.
Before Phil dies, he has one wish: to walk his daughter, Sophie, down the aisle as she weds the love of her life. Sophie’s wedding is months away, Phil doesn’t have that time.
In steps the Mary Potter Foundation, the fundraising charitable arm of the hospice.
It is the job of the foundation’s executive director, Cathy Murphy, and her team to fulfil wishes, make memories, create calm and fill the hospice with life-affirming experiences. Murphy has been in her role for eight years.
Eight years.
Eight years surrounded by death: that scary unknown that eventually comes looking for us all. But working so close to death, for Murphy, is not scary; instead she describes it as a privilege.
“The human spirit is a wonderful thing and dying people can teach you so much about what’s important,” she says. “We have people from all walks of life in here and the person with nothing and the person with so-called-everything become the same person when they’re lying in a hospice bed and their life is being measured in months, weeks or days … it’s a great reminder that today is today.”
According to the World Health Organisation, palliative care improves the quality of life of patients and their families who are facing life-threatening illness. It combines the prevention and relief of pain with the treatment of other physical, psychosocial and spiritual issues.
In the 4th century, hospices were places of rest for travellers, but in the 19th century, a religious order established hospices for the dying in Ireland and London. The modern hospice concept originated and gained momentum in England after the founding of St Christopher’s Hospice in 1967. It was founded by Dame Cicely Saunders, widely regarded as the founder of the modern hospice movement.
Patient and Family Councillor Sigourney Reschke
That movement today sees hospices like Mary Potter, which was established in 1976, concern themselves with the task of giving the dying the best days of their lives.
Murphy explains: “It’s not about changing the outcome, it’s about changing the experience.”
She says many express a desire to die at home, but for various reasons – for example, complex medical needs, or inadequate support at home – it is not always possible. And that’s when a hospice becomes vital.
Mary Potter Hospice concerns itself not only with the physical wellbeing of patients – and its medical staff work hard to ensure a patient’s pain medication is sufficient – but it offers a range of therapies including music and art therapy. It has a team of volunteers who record and write a patient’s biography. Each room has access to the outdoors. It caters for special pet visits.
It sounds lovely, but we don’t talk about it. In fact, Palliative Care SA is concerned that people do not discuss death and consider palliative care soon enough because of a misconception it is something to be fearful of.
“We completely understand people might imagine that by considering palliative care hope is dashed,” the organisation states. “But the reality is palliative care is about ‘living’ and focuses on providing people with emotional and spiritual support, pain relief and comfort care enabling them and their family to be empowered to make the most of time remaining.”
So, the organisation hopes that Palliative Care Week – which starts tomorrow and runs until May 28 – will provoke discussion about what it is to have a good death.
I n a society that values its youth and celebrates those who defy their age, is a good death something we strive for? Sigourney Reschke is the manager of patient and family counselling at Mary Potter. She says that the hospice works in conjunction with the hundreds of dying patients it sees each year, to bring about a good death, which is different for each person.
“(A good death) might be to be surrounded by people who you love in a comfortable, warm, safe environment, where you have the opportunity to say the things you need to say, to say goodbye … but that’s not the same for everybody,” she says.
“What we try to do is make those wishes come true for whatever that person and their family hopes to achieve in their time with us.”
Murphy explains that the foundation aims to raise more than $1.2 million annually so that it can help give people the good death they deserve. They receive no government funding and rely on donors.
Staff at the Mary Potter Hospice: registered nurse Luke Peeters, Patient and Family Councillor Sigourney Reschke and Executive Director of the Mary Potter Foundation Cathy Murphy.
“Our aim, when a patient comes in, is to give them the best day possible,” she says. “What is the best day when you know your time is quite finite? It could be a drive to the beach to have a cup of coffee because that’s something you’ve always done. It could be a date night in the hospice with someone you love.”
It could be like Phil: walking his daughter down the aisle. In Phil’s case, the hospice and foundation were able to organise a wedding – from the photographer to the flowers to the champagne to the guest list – in four days.
The commitment ceremony was held in the multi-faith chapel and the medical team worked with the father so that he was strong enough to get out of bed and walk his daughter down a makeshift aisle.
Phil isn’t alone. Patient after patient experiences their best day for as long as they can in the hospice environment.
Murphy talks about an 18-year-old girl who spent her final days at the hospice who wanted to go shopping and so the foundation organised for a local dress shop to bring in racks of clothes for her to try on; then there was the younger couple who wanted to celebrate Valentine’s Day in the way they did each year and so the foundation organised the specific pate, crackers, bubbles and flowers that were their Valentine’s Day tradition.
There was the man who was allowed one last visit to his favourite pub for a final round of beer with his friends. The man who had not seen his family for years, who was reunited in his final days.
Reschke says people are often surprised what they find when they visit Mary Potter.
“People don’t expect to come here where it’s light and there’s a lot of laughter and a huge amount of life and people smile,” she says.
“We laugh a lot, we love a lot. It’s sad, but we have a lot of fun, too.”
Across Australia there are 190 palliative medicine specialists, and in South Australia the Mary Potter Hospice is a key public and private provider of palliative care services, that – given the ageing population – will only increase in demand.
But, as a society, we’re not keen on talking about death. Reschke says: “Death is still a taboo subject and one that is hard to talk about and be open about because it’s scary and we don’t know what happens, we don’t know what that looks like or feels like, it’s a topic that is still hard to talk about.”
So, the role of palliative care is to demystify death, to take away the fear of facing it. “We are a resilient race in terms of being able to face what is happening,” Murphy says. “Not everybody can reach acceptance, but the aim here is to help people find peace.”
Palliative care is a very specific branch of medicine that many in the medical profession argue is becoming more important, especially as society debates the merits of voluntary euthanasia. And that’s a fair point: if palliative care works, why do we need a debate about euthanasia?
Former director of palliative care at the Royal Adelaide Hospital, Dr Mary Brooksbank, has written extensively on this very conundrum and muses: “I’ve watched many people die peaceful deaths which could easily have been traumatic and painful, including my father. I can understand why people want to alleviate suffering at the end of life and why they think voluntary euthanasia might be a compassionate way of achieving that. But with good palliative care, no one dying an expected death needs to die in extreme, agonising pain.
“I believe it is inappropriate to be having a debate in our society about euthanasia until every single health professional knows how to relieve pain and address suffering properly.”
Brooksbank argues that while Australia has a specialist stream of very competent palliative care professionals, the workforce can’t meet the needs of the entire population.
“A lot of work is being done to upskill doctors and nurses, and increasingly they are delivering top-quality care.
“The reality is though, particularly with our ageing population, that the whole palliative care sector is desperately under-resourced.”
Dr Charlotte Griffiths has dual training in both medical oncology and palliative care and works between the oncology ward at Calvary Hospital and the Mary Potter Hospice.
“As challenging as it is, it is work that I find rewarding and I feel I am making a difference to people,” she says.
“I’m able to manage people through what can be the most vulnerable and difficult time of their life and trying to make that a little bit easier along with supporting their family.
Dr Charlotte Griffiths at the Mary Potter Hospice
“Every single patient you treat leaves some kind of lasting impression and it teaches you how fragile life is, how important it is to make the best of every day.”
Just like Dr Griffiths, Luke Peeters works between the oncology unit at Calvary and the Mary Potter Hospice.
Aged just 25, the palliative care nurse has a greater appreciation for death than most of his generation’s youth. He sees death almost daily, and it has had a positive effect on him.
“It has taught me that life can be taken away from you in a matter of months,” he says. “A lot of patients tell me: ‘Experience your life, give it a go, because you don’t know unless you try’.
“One patient I remember was young, she was 43, and I told her that I had always wanted to learn another language and she said: ‘Well, hurry up and do it’. So, I’ve started French.”
Following other patient advice, last year, Peeters travelled to Europe – his first overseas trip – and this year, he started playing the piano again after 10 years away from the instrument.
“You can get so focused on: ‘I need to get a degree, I need to get money, I need to buy a house, I need to buy a car’ and you don’t stop to think: ‘What do I actually want from life?’
“Working with people at the end stage of their life and the advice they have given me, I have taken that on board.”
But for all the life that pulsates inside the Mary Potter Hospice, there is no denying that death is there, too.
And the people who work there regularly shed tears with patients’ families and friends and, later, by themselves in the staff coffee room. Peeters says: “I was always told as a nurse, don’t get too attached to your patients because then you can’t do your job properly, but as an oncology and hospice nurse, you look after these patients, generally, for an extended period of time. You know their daughter’s name and how she’s going at university and you get to know all their friends as well. It’s like you’re a part of their community.
“It is hard when they pass.”
Including Phil.
It was a Thursday when Phil watched his daughter, Sophie, wed her husband-to-be in a love-filled commitment ceremony hosted by the Mary Potter Hospice in its on-site multi-faith chapel.
He died three days later.
And while, yes, tears flowed, so too did immense feelings of joy and love. At the end, in his hospice room, kindness and laughter prevailed.
And precious memories were created in the final days of a man’s life. A lovely, fitting death.
[W]hen someone loses a loved one, it’s not only friends and neighbors who may not know what to do or say—it can also be that person’s employer and colleagues.
From whether to send a sympathy card or flowers to whether to offer bereavement leave or ask an employee when she’ll be back at work, it can be difficult for managers to know how best to support someone who’s grieving.
One common reason people grieve is because they’ve lost a close relative or friend. But people also grieve over divorces, catastrophic illnesses or accidents, and even the passing of a beloved pet.
“Death is, by far, the biggest [cause for grieving], especially if it’s untimely or unexpected,” said Andrew Shatte, a clinical psychologist and co-founder of meQuilibrium, a Boston–based company that helps people and organizations navigate change. “Sudden, cataclysmic loss shakes the very foundation of our beliefs about control and therefore shakes our resilience. There are big individual differences in how people respond to grief and what they need. For some, they need time away from the world, while others need to reimmerse themselves in it. The manager can start the discussion with the grieving employee by asking, ‘What can we do for you?’ ”
Bereavement Leave
There is no federal law requiring that companies offer bereavement leave. Oregon requires employers in the state with at least 25 workers to offer up to two weeks of bereavement leave, while Illinois requires employers with 50 or more workers to grant up to 10 workdays off for the death of a child.
While bereavement leave is not generally covered by the Family and Medical Leave Act (FMLA), the law mandates leave to address issues that arise when an employee’s covered family member (spouse, child or parent) dies on active military duty. A bill recently introduced in Congress would, under the FMLA, allow a grieving parent up to 12 weeks of unpaid leave off from work to cope with the loss of a child.
However, many companies do offer bereavement leave. The time off varies from a few days to a few weeks, said Robin E. Shea, a partner with Constangy, Brooks, Smith & Prophete LLP in
Winston-Salem, N.C.
“Most bereavement policies provide only a few days—about enough time to make arrangements, fly out of town if necessary, attend the funeral and return home,” Shea said. “But that doesn’t mean that employees cannot be given more time. If the employer offers personal leave, or if the employee has paid time off or vacation available, the employer of course should allow the employee to take it.”
In cases involving a particularly devastating loss, Shea said, her experience is that companies give the employee time off with pay, even if there’s no specific policy addressing such a situation. “If they do this” in one instance, she advised, “they would have to do the same for other employees, to avoid discrimination claims.”
How Much Time?
Are there certain types of events that should require more bereavement leave than others? For instance, if an employee loses a child, as opposed to a sister, should an employer be more lenient about time off?
“There are differences,” Shatte said. “Typically the closeness of the relationship matters. We grieve more for siblings than for cousins. Also, the level of unexpectedness, for instance, whether [the loss] involved an accident or a long, prolonged illness. And nothing is more debilitating than the death of a spouse or child.”
Shea suggests that the time off afforded a grieving worker should depend on the size of the employer, the nature of the employee’s job and the loss the employee has suffered.
“My quick answer would be [to allow] as much [time off] as the employee needs and the employer can afford to allow,” she said. “In the case of the death of a spouse or child, or in the case of a very traumatic death, like a murder, accident or suicide, I would seriously consider giving the employee as much as a month off if he or she wanted that much time.”
Returning to Work
It can be tricky for an employer to inquire when a grieving employee plans to return to work.
One way to handle this is to check in periodically with the employee to see how he or she is doing.
“Let the employee know that he or she is missed,” Shea said. Hopefully, the employee will volunteer details about her plans to return during these conversations. Another way is to tell the employee how much paid leave he or she has available and then offer to extend that with unpaid leave, if the employee chooses. In most cases, the employee will need to return to work when the paid leave runs out, Shea said.
Shatte suggests that about a week after the employee has taken bereavement leave, a manager—after consulting with HR and company attorneys—should reach out to the employee and ask what the company can do for him or her. “At that point, they can ask how much time they think they might need, with an offer to touch base periodically to see if anything has changed,” he said.
If an employee is too devastated to return to work, he or she may benefit from counseling. An employer might steer the worker to an employee assistance program or even suggest short-term disability benefits.
“I would never ask an employee to return before he or she felt ready to do so, but at some point, the employer may have to tell the employee that the job cannot be held open indefinitely,” Shatte said.
Expressions of Sympathy
Also tricky is knowing how to extend condolences to a grieving employee. Should the company send a card? Flowers? Provide meals? Should company colleagues attend a memorial service?
“These decisions need to be made by weighing the individual,” Shatte said. “How long have they been with the organization? How close is the manager to the employee? This is a sensitive time, and every outreach should be made only after consulting with HR.”
Shea said that if the memorial or funeral is in town, anyone personally acquainted with the grieving employee should try to find out if their attendance is desired. This includes the employee’s direct supervisor, she said, and possibly others further up the chain of command.
The HR department, she said, can coordinate expressions of sympathy on behalf of the company, including flowers or cards.
[I]magine that you injured yourself and there is a fresh, bleeding wound on your hand. Instead of letting the injury heal, you go about with your life ignoring that it even exists. Before you know it, the wound starts to fester, causing more pain and discomfort than before. What could have been fixed with a little bit of care and attention is now a big gaping wound that will take more time to heal.
Like physical wounds, your emotional wounds get worse when you ignore it. That’s probably why you hear people telling you to “cry it out” if you are going through a rough phase in your life.
Why some people don’t grieve
• Sadly, some of us hate showing the world we are vulnerable. We hate being perceived as powerless or weak. So we put on a brave face and make it seem like we aren’t hurt.
• Society sometimes dictates what we can and cannot grieve about. I was shamed for grieving for my pet cat who died in an accident last year. “It’s an animal, after all,” they would scoff!
• Sudden loss of a loved one or failure of a relationship can leave us stunned for a while, delaying the grieving process.
• We may want to put things behind us and move on with life and speed up the grieving process.
According to the Kübler-Ross model, a person undergoes five stages of emotions in the grieving process: denial, anger, bargaining, depression and acceptance. Skipping any of these steps can lengthen the grieving process causing more harm than good. Dr Arun John, executive vice president of the Vandrevala Foundation, who has a wealth of experience in dealing with bereavement and grief issues, tells us what could go wrong if we don’t grieve properly.
Self-blame
“Self-blame is a telltale sign of an incomplete grieving process,” says Dr John. If someone doesn’t grieve properly, they may get stuck at the bargaining stage. “They get obsessed and waste a lot of their time and energy investigating what went wrong and how they are to be blamed for it,” adds Dr John. “Usually, people blame themselves for a week or two, but if the self-blame extends for more than one month, the person could need help.”
Acute depression
“If the grieving process is not complete, the person could slip into acute depression,” says Dr John. Depression sets in when the person does not deal with his or feelings of grief appropriately. It may not show initially, but if the problem is not dealt with at the earliest, it may spill into his personal life and work. Prolonged depression can also become a cause for other health and mental problems.
Anxiety
According to Dr John, prolonged depression can also precipitate anxiety. When the loss is sudden or unexpected and if the person doesn’t give enough time for grief, he can slip into a state of stress and anxiety. In the case of a loved one’s passing, the idea of having seen death at such close quarters makes the person think about his own mortality.
Lifestyle diseases
It’s a known fact that stress, anxiety and depression can have serious effects on your health in the long run. Repressed negative emotions like fear and sadness cause elevated levels of cortisol in the blood. “It can lead to weight gain, hypertension and other lifestyle diseases,” says Dr John. Some may take to binge eating or drinking to escape confronting negative feelings; this can also affect their health adversely.
Whether it is a death of a loved one or a loss of a relationship, only you know the depth of your grief. Instead of bottling up your negative emotions, you should deal with it at the earliest. “Talking to loved ones speeds up the grieving process. If you feel no one understands you, feel free to call up a helpline number and talk to a counsellor.
[A]mbitious technocrats may predict a deathless future, but as the world stands now, we’re all going to die. This leaves us humans with the same two options we’ve had since we emerged from the evolutionary mire: Fear the final shuffling of our mortal coils, or embrace the inevitability that we’ll all be one with the dirt.
Fortunately, there are people out there who can help ease your mind about the whole “one day you’ll be dead” thing. One of those people is Carla Valentine, whose job as an anatomical pathologist, technical curator at Barts Pathology Museum, and author of The Chick and the Dead, has more than prepared her to come face to face with the inevitable end. In her book, which will be released in the United States in June, she weaves together corpse science and her intimate involvement with the “death industry” with the vital lesson about dying she’s learned over the years: Everyone wants to learn more about death whether they admit it to themselves or not, and accepting that education is the best preparation for their final days.
Valentine, whose book will be released in the United States in June, recently spoke to Inverse about the CSI effect, the future of “soul midwives,” and urban legends that just won’t go to the grave.
Carla Valentine.
>Why was now the right time to write this book?
There are two reasons, really. There is definitely more of a desire at the moment for people to speak about death and learn more about it. That’s been on an upward trajectory. That just happened to coincide with when I left my career as a full-time pathology technician and I began to work at the museum, which gave me more free time to actually start to write.
What do you think has driven that increased interest in talking about death and learning about it?
When I first studied forensic science, which was 15 years ago, there were barely any courses. Those courses began to increase with what we call the “CSI effect”. That’s an actual academic term now for the interest in death and autopsies that has emerged from the increase in books and TV shows on the topic.
I think another issue is just the cost of funerals, like many things, is rising. People want to be a bit more informed and demystify the process around death so that they can plan properly and just dispel a lot of the myths before the time comes. There have always been a lot of myths around autopsies and how we conduct them. I think people just want to know the truth and it’s a good time for it.
What do you think people gain when from learning about what happens to their body after they die?
Personally, I think that when people face this idea of their mortality, the reality of it, and the reality of what may happen to their family members, for example, they tend to live a better life. They tend to understand how quickly it can be taken away. They can appreciate their own mortality and their own health. That was always what I felt and that’s been backed up by psychological studies, as well, which I reference in the book. The people who think about mortality tend to have the highest happiness rate. I think it’s because it demystifies it. People say that you’re afraid of the unknown. Sometimes it’s better to face the reality of it. Then it’s not so scary anymore.
Fracture of a mandible at the Pathology Museum.
Do you get consistently the same sort of questions from people when they learn about your job?
I get consistently the same sort of questions and I get consistently told the same myths. Those absolutely drive me insane. I took as much opportunity as I could to answer all of the questions that I always get asked in the book. A lot of these myths have been doing the rounds since I was a child. For example, I was at the hairdresser’s yesterday, and the girl in the chair next to me overheard that we were talking about my job, and she said, “It’s true, isn’t it, that the fingernails grow and the hair grows after death?” I was like, “No it’s not like that.” I’ve heard the same things for 20 years.
What else do people get wrong about death?
People also think the deceased sit upright because of their gases, which is not true at all. Some deceased people are possibly in a state of rigor mortis, where they’ve passed away in a chair and so that means for a while they’ll still be in a bent-over position. They’ll look slightly like they’re sitting up when they’re on the slab. But they don’t sit up because of the gases. There are the odd groans or burps or farts. That is true.
The most annoying urban legend is the one where someone tells me, “A friend of mine knows someone who got a rash and when she went to the doctors she found out that it can only be caught from a corpse.” Basically insinuating that the guy that she’d had sex with or whatever has had sex with a corpse. That always drives me insane because there’s nothing on a deceased individual that isn’t on a live individual. We have the flora and fauna. There is no such thing as a parasite or a fungus that you can get from the dead.
It just goes to show how fascinated people are by those subjects. I’m doing my MA on the relationship between the sexualized gaze and anatomical displays. When I blog about sex and death and people go, “Really?” I think, look, you’re all interested in sex and death, just look at this one urban legend that’s nearly outlived me. Clearly, people are far more interested in sex and death than they’d like to let on.
A broken cervical spine.
What is it about that intersection that people keep on coming back to?
They’ve had similar periods in time where they’ve been sort of considered taboos. But the simple fact is sex is what begins our lives and death is what ends it. They’re two sides of the same coin. They’ve always been connected to each other psychoanalytically because everything you do, according to Freud, you do with either the death drive, the morbido, or a life drive, which is libido.
Inside Barts Pathology Museum.
Are there any new modern trends you’ve noticed, when it comes to what people want immediately before and after they die?
There are definitely newer trends towards much more environmentally friendly funerals. A lot of people are moving away from the traditional funeral, and opting for a green burial. That means that they wouldn’t be embalmed. Embalming was never as big over in the United Kingdom as it is in the U.S. anyway, but it’s still definitely dwindling. Natural burials where people are placed into wicker, cardboard coffins, or linen and buried into an actual burial ground. There’s definitely an increase in people who want that, while we never really would hear of that request a few years ago.
And then there’s death doulas and end of life doulas. They’re just like midwives, but for death. I met one the other night and he actually called himself a “soul midwife.” Death doulas are usually brought in when the person is in hospice. It can also be as soon as a person discovers that they’re terminally ill. In the same way that a midwife is there for the mother as she’s becoming dilated and then she delivers the baby, the doula helps the person through the process of death. It’s a similar process, I suppose, just the other way around.
[A] fresh look at how Do-Not-Hospitalize (DNH) orders affect the movement of skilled nursing care residents shows those residents with such directives experienced significantly fewer transfers to hospitals or emergency departments (EDs). Report authors said long term and post-acute care providers may see the information as evidence that considering DNH orders in end-of-life care plans could benefit residents and the nursing center in which they live.
“Residents with DNH orders had significantly fewer transfers. This suggests that residents’ end-of-life care decisions were respected and honored,” the authors said. “Efforts should be made to encourage nursing home residents to complete DNH orders to promote integration of the resident’s values and goals in guiding care provision toward the end of life.”
Results of the new study are in the May issue of The Journal of Post-Acute and Long-Term Care Medicine (JAMDA) in an article titled, “Are Hospital/ED Transfers Less Likely Among Nursing Home Residents with Do-Not-Hospitalize Orders?” JAMDA is the official journal of AMDA – The Society for Post-Acute and Long-Term Care Medicine.
The design of the study saw researchers examine Minimum Data Set 2.0 information from more than 43,000 New York state skilled nursing care residents. Of that number, 61 percent of residents had do-not-resuscitate orders, 12 percent had feeding restrictions, and 6 percent had DNH orders.
“Residents with DNH orders had significantly fewer hospital stays (3.0 percent vs 6.8 percent) and ED visits (2.8 percent vs 3.6 percent) in their last 90 days than those without DNH orders,” the report said. “Dementia residents with DNH orders had significantly fewer hospital stays (2.7 percent vs 6.3 percent) but not ED visits (2.8 percent vs 3.5 percent) than those without DNH orders.”
After adjusting for statistical variables, researchers said the results show that for residents without DNH orders, the odds of being transferred to a hospital was significantly higher than those with DNH orders.
One of the report’s authors, Taeko Nakashima, PhD, visiting assistant professor, State University of New York (SUNY) at Albany and adjunct assistant professor at Rutgers University, stresses that preparing DNH orders requires collaborative efforts and thorough discussion among the residents, health care proxy, and the attending physician about the goals of the resident and the resident’s prognosis and treatment options.
“Ethical end-of-life care in nursing homes must respect the resident’s autonomy and advance directive,” she says.
