Tag: Death Talk

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‘Death doulas’ assist people before and after death

Death doula Christy Marek talks with Mark Quinlan at Our Lady of Peace in St. Paul, Minn. on Friday, May 10, 2019. They discussed the specifics of funeral planning and the nuances of the end of life. She has followed him from the hospital to a transitional care unit, and now to the hospice.

By BOB SHAW

In the dimly lit room, Mark Quinlan struggles to be heard.

His voice box has been silenced by his thyroid cancer. He tries to whisper, but the hum of his oxygen machine drowns out the sound. The voice of the bone-thin 67-year-old barely carries to the edge of his hospice bed.

But Christy Marek is listening.

Marek, an end-of-life assistant called a death doula, leans forward to catch every word. She asks him about funerals, the afterlife and memories of happier times.

“Do you want last rites?” she asks.

The whisper: “I suppose.”

She has been with him for months, in a hospital, transitional care unit and a hospice. Every step of the way, she has guided him through a dark and scary wilderness.

In many cases, death doulas are redefining how people approach death. They are breaking away from traditional generic funerals, and pioneering approaches to grieving, memory and death.

“Death is being reimagined at this moment,” said Anne Murphy, owner of the death-consultation business A Thousand Hands.

In the past, doulas were women working as midwives to help the process of birth. “Death doula” is a term for people who help with the other end of life. They also call themselves celebrants or soul midwives.

“They all do the same thing — companioning for people dying,” said Jane Whitlock, a St. Paul death doula.

The National Doulagivers Institute reports that its training has quadrupled in two years. President Suzanne O’Brien said she has now trained 402 certified doulas in a six-month course. The cost is $997, Twin Cities Pioneer Press reported.

“I just got back from a month of training in Thailand,” O’Brien said in April. “This is needed around the world.”

Doulas-to-be are drawn to a job that that pays up to $100 an hour in Minnesota. The trainers are proliferating, with names like Doulagivers, Lifespan Doulas, Soul Passages and the National End of Life Doula Alliance.

The traveling doula schools are arriving in Minnesota.

One session starting May 31 offers a three-day program by the International End of Life Doula Association for $750. Or you could get training from the Conscious Dying Institute, which is offering three-day classes starting June 22 and September 26, for $2,995 and $1,895, respectively.

The inconsistency makes some uncomfortable.

“I look at the programs where you get certified after a weekend. It is not doing the people you work with justice,” Marek said.

“It is frankly a little bit messy.”

Doulas sometimes overlap the services of a hospice — causing some friction.

“Hospices frankly do not know what to do with the end-of-life doula role,” Marek said.

Susan Marschalk, director of the Minnesota Network of Hospice and Palliative Care, said they do not compete but must learn to work together.

“Doulas are newer, and there is some trepidation about them,” Marschalk said. She said hospices provide medical care and emotional support for dying people.

Doulas are flexible, hired by the hour. They can be employed before or after the dying process begins, helping with funerals and commemorations.

The training for death doulas is sketchy.

It’s a new vocation, with no regulations or standards. With no training whatsoever, anyone can start working as a death doula.

Sometimes they are hired months before a death, and work for months afterward. Some are called at the last minute and may help only in a person’s final hours.

“This is so new. We are all finding our way,” said Marek, of Lakeville, owner of Tending Life at the Threshold.

Being a doula is not a full-time career — yet.

“Right now there are no full-time death doulas,” said doula Whitlock. But she predicts that as baby boomers age, the demand will increase along with the number of deaths.

Doulas seeking full-time work sometimes branch out into related areas — paperwork, aging in place, consulting, or doula services for pets.

“Dying people want to put things in order,” she said. She helped a woman arrange for her ashes to be dropped into the Mississippi River from a pedestrian bridge.

Death doulas encourage doing whatever is meaningful — which can often mean breaking the rules.

For example, one dying man recently requested a wedding and an end-of-life celebration — in the same service. He was engaged, said doula Murphy, and saw the dual-purpose ceremony as meaningful.

What was meaningful at Susan Showalter’s funeral was utterly original.

Showalter, 71, of St. Paul, died in December of diabetes complications. End-of-life adviser Murphy suggested a home vigil, displaying the body for visitors to see.

About 175 mourners were served white wine and Doritos — Showalter’s happy-hour treat.

Respecting an ancient ceremony, they washed the body with washcloths and pans of water. They anointed her with oil, dabbing it on her face and hands.

The group spontaneously sprinkled rose petals to make a pathway between the body and the funeral-home van.

Once the body was gone, they shaped the petals on a table into an outline of her body. Where her feet had been, someone placed hockey socks — which she wore when her feet were cold.

The personal touches enriched the process, said her husband, David.

“This allowed us to be in charge,” he said. “We were participants, not just observers.”

“I swear at least 20 people thanked me for such a wonderful way to say goodbye.”

At other times, death doulas help celebrate the lives of the deceased — before and after they die.

On May 10, Marek hovered at the bedside of cancer victim Quinlan in Our Lady of Peace hospice in St. Paul.

She reminded him of the impact he had on his students, from 40 years of teaching at Centennial High School in Circle Pines.

One of them — Chris Roskowinski — flew from his home in Sherman Oaks, California, when he learned that Quinlan was dying.

The night before, he was taken to the opening-night play at the high school, which he had helped direct until the cancer left him incapacitated. The cast and the audience honored Quinlan — which made the occasion both happy and sad.

“Tell me, did that make it easier for you?” Marek asked. “Harder?”

After a pause, a raspy whisper rose from the bed: “Easier.” The word seemed to hang in the air.

At his bedside, Roskowinski could barely hear Quinlan speak, but nodded appreciatively.

“She can be his voice,” he said.

Complete Article ↪HERE↩!

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Why won’t we talk about death?

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Standing under the canopy, hiding from the scorching sun, I listened to stories of my grandfather. Meanwhile, my grandmother stared aimlessly ahead, her dementia shielding her from her husband’s body — neatly tucked inside a wooden box. I had met my family in San Diego to mourn my grandfather’s death, but confronted with my grandmother’s foggy-eyed gaze, I found myself wondering what the end of her life would look like.

As a family medicine doctor, I knew what conversation was needed. I also knew the challenges of initiating such conversations. The week before, I had seen a 95-year-old gentleman have his ribs crushed and crumpled like papier-mâché during CPR because there was no documentation indicating he wanted anything differently. I remember sitting anxiously the month prior with a family trying to decide whether to “pull the plug” on their comatose father/husband, uncertain of his wishes, having never had that conversation.

These conversations are hard, but they are immensely important. Regardless of how  healthfully we live or how much medical care we receive, we will all die. Yet, understanding this intellectually is vastly different from truly feeling it; raw confrontation with our own mortality is frightening. Many of us live in denial about death — shying away from discussing it — and many medical professionals act as if death is a problem to be solved, rather than a process to be lived. Consequently, while 92% of people believe talking with their loved ones about end-of-life care is important, only 32% of people do so. Similarly, while 97% of people say it’s important to put their wishes in writing, only 37% of people have such written documentation.

We mustn’t succumb to this cultural fear of death. When we confront our end-of-life processes through humble inquiry and acknowledge our own mortality, we are able to articulate what we want to avoid. In doing so, we are not harbingers of misfortune, but rather active participants in care that helps ensure we live and die in a manner consistent with our values and priorities. While engaging in this emotional discomfort can be daunting, the avoidance of such conversation is far worse.

Too often, I find critically ill, hospitalized patients who have not yet considered how they want to live when their health is severely compromised. This not only contributes to excessive health-care expenditures (25% of all Medicare costs are from the last year of life), but it creates enormous familial stress when life-threatening decisions — such as withdrawing life-support — are unexpectedly thrust upon family members. Furthermore, ignoring our inevitable futures prevents us from receiving care we want — 70% of patients report wanting to die at home but less than half do so.

We must find the courage to discuss these issues with our doctors, our parents and our children. Fortunately, there are examples throughout the country paving a way forward.

“Death Cafes” are now spread throughout the country, where folks come together to talk about end-of-life care. Card games, such as “Hello,” offer creative opportunities for friends and family to discuss hopes and fears surrounding death. To some, this may sound outlandish, but when such tactics have been embraced, marked change has occurred, such as in La Crosse, Wisconsin, where similar efforts have led to 96% of people holding advance health care directives.

Bringing such conversations to the forefront of our collective consciousness, as was done for my grandfather, is possible … if we so choose. Ask your primary care provider at your next appointment to offer insight on advance care planning. Explore resources like Stanford’s Letter Project and The Conversation Project, which aim to help us articulate our health-care priorities and personal legacy.

What greater gift can we give our parents than to humbly inquire about what is most important to them as they age, so we can help facilitate their health-care goals? In so doing, not only might we reduce familial stress, we may liberate our families and ourselves to fully live.

Complete Article ↪HERE↩!

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As First US State Approves Human Composting, ’The Green Reaper‘ Has Your Guide to Eco-Friendly Burials

By McKinley Corbley

When you’re looking at Elizabeth Fournier’s funeral home from the street, it looks like any ordinary farmhouse nestled into the hills of Boring, Oregon—and even after she welcomed me through the front door, it seemed hard to believe there were two wicker caskets tucked neatly in the back room of the cozy house.

Offering woven caskets is just one of the things that makes Fournier’s mortuary business particularly remarkable.

With the enormous costs of chemically-treated wood coffins, concrete burial vaults, liners, cremations, urns, cemetery space, and embalming, an average funeral in America costs about $10,000. In addition to adding a financial burden to the backs of grieving families, these burial methods are also notoriously toxic for the environment.

Fournier, on the other hand, has made a name for herself in the funeral industry by ditching toxic burial methods altogether in favor of “green funerals”.

When Good News Network first published an article on Fournier’s trailblazing mortuary career in 2016, she told me about how she created biodegradable urns out of dryer lint, flour, and water so she could give them away to poorer families who couldn’t afford traditional funeral costs.

Not only did she offer discounted services to low-income families, Fournier has also facilitated dozens of funerals for parents who lost their children – and she didn’t charge them a dime.

“As long as the mortuary board is happy with me, and I am being ethical I tend to march to my own drum,” Fournier told GNN in 2016. “If a family is truly having a hardship, I have no issue giving services away.”

Since opening Cornerstone Funeral Services 14 years ago, her passion for eco-friendly mortuary practices has earned her the nickname “The Green Reaper”, although she was quick to assure me that she wasn’t the one to coin the term—there nothing is scary about the humbling way she talks about death and grief.

Beyond her compassionate and eco-friendly business practices, the ease with which she offers her guidance, empathy, wisdom, and expertise is particularly singular. As we chatted in the Cornerstone funeral parlor, she recounted awe-inspiring tales of uplifting funerals and intimate ceremonies that she had been invited to attend after her consultations. Despite her passion for arranging more consoling memorials, she also spoke very frankly about the ones that had been so heartbreaking to facilitate. She simply said that they “just plain sucked”.

Regardless of the circumstances, she emphasized that everyone should be allowed to grieve in their own way. Fournier herself recently had to cope with the loss of her father, but she says she likes to remember him fondly by the numerous jigsaw puzzles that they did together (all of which have been lovingly glued together as a makeshift wallpaper for the Cornerstone funeral parlor bathroom.)

Such encouraging examples of personalized memorials are featured in her new book called “The Green Burial Guidebook: Everything You Need to Plan an Affordable, Environmentally Friendly Burial”.

The DIY manual is as fascinating and informative as it is relevant. According to a 2017 survey from the National Funeral Director’s Association, just over half of participants expressed interest in an eco-friendly funeral. Furthermore, 62% of consumers felt it was very important to communicate their funeral plans and wishes to family members prior to their own death, yet only 21% had done so.

What makes the guidebook even more relevant is a law that was passed by the Washington state legislature at the end of May.

The bill, SB 5001, makes Washington the first US state to legalize human composting—also known as “liquid cremation”. Up until the law was passed with sweeping bipartisan support (80-16 in the House and 38-11 in the Senate), the only legal methods of post-mortem funerary processing were cremation and burial.

Now, however, bodies can be naturally processed into clean, odorless soil that can nourish the planet without taking up any space in crowded, pesticide-laden cemetery spaces.

“Natural organic reduction and the conversion of human remains into soil will be opening in the Seattle area in late 2020, and it’ll be the first facility in the world where this can be offered to the public,” Fournier told GNN. “It’s very exciting. Until then, there will be a large push to get the word out and to improve the sustainability, the conscientiousness and the meaning of it all.

“I believe other states are waiting to see how this program will develop before they set foot into the human composting realm,” she added, “but I think it is beautiful, regenerative and really aligned with the cycles of nature.”

Complete Article ↪HERE↩!

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The ghost in the machine – what will happen to online you after death?

Each day we create a wealth of online data, especially on social media

By Susan Brown

Few of us plan our legacy for when we’ve died and how we’ll live on in the lives of others. At Marie Curie our nurses help terminally-ill people to create memories for their loved ones. One nurse helped create a mixed music playlist to help a spouse sleep when their loved one is no longer lying next to them. Others helped to record ­stories, write letters or ­capture ­photographs. These are all very intimate and physical legacies, but as technology advances and we are increasingly living more of our lives online, it’s time to think about what people’s digital legacies will be.

In an increasingly digital world, we’ve shared online mourning when a celebrity dies, we’ve grieved when people we met online have died, and we’ve also been touched by stories of people online that we didn’t know.

Most of us have digital assets and online accounts. We need to think about what will happen to them when we die and if we want to leave a digital legacy online.

The Law Society advises that ­people should leave instructions about what should happen to their social media and online accounts after their death. The Digital Legacy Association has materials on its website to help people consider and leave a digital will.

There’s been a recent trend of video blogging, where people tell their stories to be shared after their death. Facebook has a feature to allow accounts to be memorialised so you can set a legacy contact to manage your account. Other technologies, such as Afterbook, enable you to ­create a home for memories, stories and photos.

It’s important to think about what you want to leave behind, and how you want to be remembered online. It’s also important to consider who owns any data left behind, how accessible and enduring that data will be, and how it will be protected.

In my lifetime we’ve seen incredible advances in technology. We’ve moved from VHS to DVD to Blu-ray. We’ve gone from no mobile phones to basic Nokia 3210s to the iPhone. ­Likewise, the way we interact online has changed. The first social media site was launched in 1997. Two years later, the first blogging sites were established and in the early 2000s we saw sites such as Myspace and Bebo which have either been replaced or lost the popularity they once had.

Are we naïve to think that any of the current websites and software will still be available and as commonly used in the next 20, 50 or 100 years? It’s impossible to accurately predict what the world will look like then.

Unless data is transferred across platforms, carefully planned online legacies may not be accessible to ­others in the future.

Even if they are, memorialising a Facebook page doesn’t ensure that what we want to be left behind will be seen. There’s a whole wealth of data on my social media to sift through, data that it’s likely no one will want to access in the future.

In comparison though, my ­grandfather was a plane navigator in the Second World War. I know this because he’s told me his stories, I’ve seen the photographs and held his medals in my hand. Although he is still alive, his memory will live on and will be passed down generations.

It’s interesting that physical ­artefacts could stand the test of time more than digital artefacts. There’s a common perception that when something is online, it will last ­forever, but that might not be the case.

These are all concepts explored in prominent psychologist Elaine ­Kasket’s new book, All the Ghosts in the Machine. Elaine highlights that while privacy is a fundamental human right, it is not a right for the dead. There is no legislation that ­protects people’s privacy when they’re gone. A digital will can ensure that only certain people can access someone’s data, but that might have serious implications, especially if a loved one finds information in an online account that the person ­never intended to share and is no longer there to explain. That’s part of a ­digital legacy too, and can cause real pain to those left behind. What can that do to the grieving process of the bereaved?

Complete Article ↪HERE↩!

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Here’s Some Tips That Will Help Your Kids Deal With Bereavement

by Anthony Martin

It’s difficult explaining death to a child, especially the loss of a relative. You might have questions about how to begin the conversation, or you might feel uncertain about what to say.

Naturally, you want to protect your child from feeling the same pain you are experiencing, but it is crucial that you speak honestly and openly about the situation.

Helping your child understand grief and loss is best for their emotional health and well-being.

Explaining Death to a Child

Children might not understand that death is permanent. They may ask questions like, “When is Mommy coming back?”

Although it may seem gentler to use phrases such as “passed away” or “went to sleep,” it can be confusing. Try to say terms like “dead” or “died” to help them understand better.

Share basic facts when you feel it is appropriate to help settle a child’s curiosity about death. It’s important to answer questions your child has simply and directly, and it’s OK to admit that you don’t have all of the answers. Try to remain concrete in your explanation by saying something like, “a person’s body stops working when they die.”

Even though older children may understand death better than younger children, it may still be difficult for them to know how it could happen to someone so close to them. That’s when it is essential to explain that death is a natural part of everyone’s life cycle.

Differences in Bereavement by Age

Bereavement differs for everyone, but at specific developmental stages in a child’s life, it can look notably different.

  • Babies/Toddlers: Although at this age, children might not have the language to say how and what they are feeling or have a complete understanding of death, they can still experience separation and loss. They may pick up on the distressful feelings of those around them.
  • Preschoolers: Children at this age might find it hard to grasp that death is permanent. They need a lot of reassurance because they are at a stage of magical thinking. They may believe that someone will come back to life again or that they made the person die.
  • Primary-School Children: At this age, children may still have some confused thoughts about death and may feel that is something temporary. They may also think that the person can still feel things like hunger or cold. They may ask direct questions about where the person is and what happened to them.
  • Older Children: By this age, children know that death is not temporary. They are more aware of how adults and others are reacting to death, so it’s important to talk honestly about events and feelings. They need regular reassurance that their grief is understood.
  • Adolescents: Teenagers may react like younger children or have reactions akin to those of an adult. They will probably want to spend more time with friends than with family for support. Their feelings may be overwhelming, and although they can appear to be fine, inside, they may be genuinely hurting or suppressing how they feel.

Emotions That Accompany Grief

There is no one right way to grieve. It’s common for children to express many emotions, just like adults, but they may express them differently.

They may feel shock, guilt, sadness, anger, anxiety, fear, loneliness, and helplessness. All of these feelings are normal. They may feel unpleasant, but they are all elements of the process of grieving.

It’s important to help your child accept how they are feeling and not push them away or deny their feelings. It’s painful to go through bereavement, but helping them connect with their emotions is a good step toward healing.

Ways to Help Kids Cope

Children need to know that they are not alone. Having support from family and friends and being able to talk to them can be very beneficial.

They may also need spiritual support if that helps them grieve better. You may want to seek counseling for your child to help them deal with their emotions and the loss.

Encourage children to read books or poetry when they are grieving. Motivate them to exercise, and make sure they are continuing to eat healthy foods. Allow them to take time to relax.

You and your child may need time away from work and school. Help your child to cope by engaging in social activities.

The most significant thing children can do to deal with death is to be patient with themselves and allow themselves to feel the emotions related to the loss.

Below are some helpful resources to assist with this very difficult matter.

Complete Article ↪HERE↩!

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My Odd Job: I help people live a good life, up until their last breath

By Anna Lyons

Most people know what a birth doula is, but not many have heard of an end of life doula.

Sometimes we’re called death doulas, death midwives, end of life companions or soul midwives. While a birth doula provides support and guidance to mothers at the start of life, an end of life doula provides practical and emotional support at life’s end.

Often I’m called in at diagnosis when there’s an element of disbelief and panic but sometimes it’s at the last minute when someone is actively dying. Their needs can change, too – someone who doesn’t require much support in the beginning can need a lot more assistance as their illness progresses.

No two days are ever the same. One day I might be going to hospital appointments with someone I’m working with or advocating on their behalf with their medical team. Another day I might be helping children say goodbye to their mum or dad. Some days I’ll be attending funerals.

There’s a very practical side to my job. I might help someone write an Advance Directive, a will or a do not resuscitate order (DNR), and help anyone thinking about appointing a lasting power of attorney.

Disbelief often accompanies a life-limiting diagnosis. Often, in the stiflingly small consultant’s office, any words spoken after a devastating prognosis fall onto ears that are powerless to hear any more. I take extensive notes in consultants’ appointments because I know my clients will be too distressed to process it all.

One client I worked with had an amazing medical team, an incredibly supportive and present family and a big group of friends.

She contacted me because she needed someone to offload to without making her amazing support network feel inadequate or unappreciated. She wanted someone she didn’t feel she had to protect from the harsh realities of her illness and her feelings about it.

They never knew she’d sought extra help. I only found out she’d died from an online obituary.

Yet some people don’t have family and friends who can help them, or who can’t take time off from jobs that pay the bills.

Illness can also drive our friends and family away. These losses can be isolating and frightening at a time when you most need company and reassurance.

At 17, I found myself standing at the graveside of one of my nearest and dearest friends. Despite being ill for a long time, we didn’t know that he’d been diagnosed with an incurable cancer.

He knew he was going to die but didn’t feel able to tell us any of us. There was a stark clarity to sitting in that packed congregation knowing he was barely out of their teens. His death shaped my life and his silence made me decide that I wanted to help people at the end of their lives.

When I first meet people we’ll talk about what a good life looks like to them and what they would consider to be intolerable.

They’ll set out boundaries around what they consider will be the limit of their suffering, and as their illness progresses, those boundaries almost always shift.

People have described their illness as being like a huge magnifying glass, augmenting what matters most and sometimes allowing them to let go of things they realise don’t really matter.

Others have described to me the lucidity that can come with a short prognosis, how things taste and look different when you know you’ll only ever get to eat or see them a few more times. Of course, this isn’t always the case, and depression can go hand in hand with being physically unwell.

With some clients it’s more important to acknowledge just how sh*t the situation is. There’s no fix for end of life. There’s no cure. Sometimes all someone needs you to do is acknowledge how unfair what’s happening is. The most fundamental part of my job is listening: to really hear what life is like for someone, to bear witness to their pain, to sit with them in their darkest moments and to be there.

That said, I am always amazed at how people are able to find humour in the darkest of situations.

I once helped a young woman say goodbye to her father. She hadn’t been able to get to see him before he died and I accompanied her to the funeral directors.

She was distraught. She’d told me that he had always been a joker and while his lame jokes drove her to distraction during his life, they would be one of the things she’d miss most.

She started crying so I handed her a box of tissues, which she dropped. She then bent down to get it, stood up too soon and knocked his coffin, rocking him like a dingy on a rough sea. I looked up in concerned horror to find her giggling hysterically. She said he’d have loved the sitcom silliness of the moment and felt they’d shared one last laugh.

That people can smile despite, in spite, of all they are facing, that family and friends can demonstrate and show a love that’s pure and deep, is humbling to bear witness to.

I don’t really believe in the idea of a ‘good death’. Describing death as ‘good’ makes me feel I’m doing a disservice to life, to loss and to grief. My job is about helping people live a good life and that ‘living’ includes dying.

The dying, we all hope, will be as gentle and as painless as possible but it’s the living of a good life right up until your last breath, that what it’s all about.

Talk to your children about life and death, dying and grief – it is as important as talking to our children about sex and relationships. And do it now. It’s so much easier to have those conversations when everyone is well. Every adult should write a will, we should all have an Advance Directive, appoint a lasting power of attorney and sign a DNR.

I have regular supervision and therapy to help me do this job. I take time out, and I would prefer to work with fewer people and do an excellent job than take on too much and buckle under the emotional weight.

Hanging out with my three daughters and walking our silly one-eyed dog helps me keep my emotions in check. Gelato helps a lot too.

Complete Article ↪HERE↩!

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Campaign aims to get people to better prepare for death

Initiative comes as survey suggests talking about dying is still an uncomfortable subject

Bella Vivat, a visitor at The Departure Lounge inside Lewisham shopping centre in London.

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It comes to us all in the end. But despite the inevitability of death, few of us feel comfortable talking about it and most have made no plans for how we would like our final moments to play out, according to research.

Now, leading experts from the Academy of Medical Sciences are launching a campaign aimed at making death a more acceptable topic of conversation.

Prof Dame Lesley Fallowfield, a cancer psychologist at the University of Sussex, is urging people to draw up death plans, much like they prepare for the birth of a baby.

“We have birth plans where people record what they’d prefer to happen,” she said. “We all know that events sometimes supersede your wishes, but we can think it through and make it the best it can possibly be. Making a death plan shouldn’t be seen as a macabre thing to do.”

Fallowfield said failure to plan and talk about death meant many people do not spend their final weeks and hours as they would have chosen and families are frequently left with regrets.

A poll by the academy, conducted by Ipsos Mori and published this week, found that six in 10 people feel they know little or nothing about the final hours of life, with many people getting information about dying from documentaries or soaps rather than conversations with medical professionals.

One third of the nearly 1,000 people who participated in face-to-face interviews declined to answer questions about death and dying, suggesting that many feel uncomfortable talking about the subject. “Challenging this taboo is at the heart of the academy’s national campaign,” said Prof Sir Robert Lechler, the academy’s president.

To jump-start the conversation, the academy has opened a pop-up installation, The Departure Lounge, at Lewisham shopping centre in south-east London, aimed at engaging people with the topic. Occupying what was previously a mobile phone shop, it features a large pile of suitcases emblazoned with messages and questions about the final journey we all face.

On the first day of its month-long residency, it prompted mixed reactions from shoppers.

Michelle Charlesworth, 35, from Lewisham, said that as a result of her visit she was planning to write down what she would like to happen when she dies. “It takes that responsibility off your loved ones,” she said. “It sounds like a small thing, but I’d want to be in a really nice pair of pyjamas. I’d probably want to be cremated or buried in them too, actually.”

The Departure Lounge has prompted some to make plans for their death.

Bella Vivat, who works in palliative care research at UCL, said visiting had convinced her to draw up an advanced directive, a legal document in which a person specifies what actions should be taken for their health if they are no longer able to make decisions for themselves. “We live our lives as though we’re not going to die,” she said. “I’m going to go away today and do that.”

Bambii Nzinga, 24, an actor and screenwriter, who is working as a host at the installation, said she initially took on the job because she thought it might provide interesting writing material. Then her four-year-old son started asking her about death. “I was so prepared for the birds and the bees conversation,” she said. “But when he asked me if I was going to die, I didn’t know what to say.”

On the spur of the moment she told him she was never going to die, but has since revised her answer. “Children are happy to talk about death, it’s us that put the fear in them,” she said.

Some wandered into the lounge under the impression that a suitcase sale was underway and looked baffled after reading signs such as “everybody’s got to die of something”. “I’m not ready for death,” one unsuspecting shopper exclaimed making a quick exit.

Smaller versions of the lounge will be appearing at 30 other locations across the UK over the summer.

Fallowfield said that while death was normally sad, failing to talk about the inevitable can make the experience more traumatic for both the person who is dying and their relatives afterwards. “It’s quite awful when you see families who’ve never talked about it having these hollow conversations and feigned smiles about a future that’s never going to be realised,” she said. “When you see families who have openly acknowledged death, they often share sad and tearful moments, but also laugh and comfort each other.”

The poll found that people were around as likely to get information about death from documentaries (20%) or films, dramas and soaps (16%) as they are from medical professionals (22%). The distressing or even glamourised portrayals of death in films and television meant that people may be getting a unrealistic picture of what lies ahead.

“In films you often get dying words – someone gasping out things like ‘Please tell Jim I love him’, which sort of makes me laugh,” said Fallowfield. “I’ve never seen that happen.”

Instead, she said, people normally “quietly drift away”. “They start to lose consciousness, their breathing may become laboured,” she said. “It’s really important to hold their hand and continue talking to them. That makes you feel good too. It doesn’t necessarily have to be horribly traumatic.”

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