We took a snapshot of the last year of people’s lives – here’s what we found

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Sorry to be the bearer of bad news – sooner or later, we’ll all reach the end of our lives. Many of us are not keen to face this event, nor the time that comes directly before. It’s actually hard to say what is the bigger taboo, death or the personal care that most of us receive in our final days and weeks.

According to the Health Organisation, more than half of us die of an illness that requires some form of end of life care. Depending on your definitions, the figure can be much higher – a German study found it to be more like four out of five, which is in line with findings from my work in Scotland. Either way, care providers expect the absolute numbers of people in Western countries in need of end of life care to keep growing as populations continue to grow older in future.

As you might expect, older people have a higher chance of developing ailments that need care. The group of those experiencing a long period of dwindling physical and mental faculties due to frail old age or dementia is already rising: according to the death records that we examined in Scotland, for example, it doubled from 5.1% in 2001-02 to 9.7% in 2011-12, and dementia rates have continued to increase. The share of people undergoing shorter periods of decline, such as cancer patients, rose to 29.5% of all deaths in 2011-12. These numbers are slightly higher than many other countries, but roughly comparable.

Given these figures, you may wonder: what is life like at its end? Do people receive the care and support they need? The answer is, not everyone does. My colleague Iain Atherton and I mapped the last year of people’s lives in Scotland using a mixture of census data NHS data, and death records. Here’s what we found out.

Deprivation and being alone

We looked at all 53,517 people who died in Scotland within a year of the last census in 2011. About one in five were below pension age, half were aged 65-84, and just under a third were 85 or older. Every third person lived alone, and around 40% were widowed. Not the ideal situation when you need care.

The closer people were to dying, the more likely they were to have moved in with others. This varied by neighbourhood deprivation, however. In more deprived areas, 37% of people aged 70 and over – those most likely to need care – still lived alone, even in the last four weeks of their lives. In the least deprived areas, the rate was 25%. (In this age group as a whole, 18% of people died in a care home.)

To my knowledge, nobody has come up with directly comparable figures for other countries. From Eurostat data from 2014, though, we do know that 32% of over-65s in the EU live alone, for example, and that the UK is almost exactly in line with the average.

Let’s be honest: few people find the idea of living alone in old age appealing, no matter what their health status. In many cases, it goes hand-in-hand with depending on external services for care – strangers that invade the innermost sphere of your privacy. It’s probably one of the major reasons why people don’t like talking about this stage of life.

Consider new options

Yet if we want to make our last months and years of life less bleak, talking and acting is exactly what we need to do. As I have just discussed at a show at the Edinburgh Fringe on the subject, we should consider new options. We need to think outside the box, and ensure that we are the decision makers instead of being pushed back into the role of dependent.

Are retirement villages an option, for example? Or better still, housing complexes with people from different generations, where even a frail grandad can help the neighbour’s boy with his homework and still feel part of the community? Or can you band together with some friends, either in one house or in adjacent flats?

Bicep building.

In many cases, care decisions are made ad hoc, because an immediate solution is required. When your mother has had yet another fall and it’s clear she can no longer stay on her own and needs a care home bed in two days when she comes out of the hospital, there is no time to find the best home for her. You must take the place that is available.

Isn’t it funny that many of us tend to take out life insurance in case we die prematurely but don’t make provisions for the very likely possibility that we’ll need care? I doubt you look forward to your care home stay, the tightly scheduled visit of the district nurse, or the look on the face of your children when they need to decide whether they want to sell the house they grew up in to pay for better care for you.

Rich or poor, man or woman, the clock is ticking for all of us. Too many older people are facing the most vulnerable stage in their adult lives alone, and the next generation needs to find ways of avoiding this situation. It’s not to say that governments and healthcare providers shouldn’t take responsibility for care – they do anyway – but if we blindly rely on them to provide, there are limits to what we will receive. Before it’s too late, it’s better that we also come up with plans of our own.

Complete Article HERE!

Death doulas explain why everyone should have an end-of-life plan

Death doula Carmen Barnsley thinks people should talk more about death and be more informed about their options.

By Nicole Mills

A new breed of doulas are helping break down the fear around death, which they say shouldn’t be a confronting word.

Carmen Barnsley from Melbourne said just like birth doulas, death doulas were there to provide support, knowledge and assistance during times of upheaval and uncertainty.

“I find it is just a privilege and a humbling experience to be where life enters this world and when life leaves it,” the former nurse said.

“Death is just as amazing an experience as birth is, but we celebrate birth and we deny death.”

Ms Barnsley has had her own experience with death. Her son died when he was five months old.

While she was in the depths of numbing grief, the hospital handed over a Yellow Pages and told her and her husband they needed to pick a funeral parlour.

It was the first of many conversations she had during the grieving process that made her realise that as a society, we need to start doing death better.

“Some cultures do death beautifully. It’s a reflection of the person’s life, whereas I think we do it pretty poorly,” she said.

“The honest thing I can say about the doulas in my network is everyone has been through a personal process of death.

“A lot of the doulas who are coming from personal experiences are coming from terrible personal experiences and were seeking answers to improve it so that doesn’t happen to another person again.”

Emotions run high

Ms Barnsley said her colleagues came from all walks of life, having worked as hospital chaplains, accountants, social workers, celebrants and in the funeral industry.

She wants people to understand that knowledge is power, especially when it comes to death.

“A death doula isn’t about dying, it’s about allowing that individual to live until they die.

“I find when somebody puts a plan in place they will then live until they die, as ironic as that sounds.”

She recommends having conversations about death when you’re young and healthy instead of leaving it until death approaches when emotions run high.

“In the medical profession we have informed consent. I’d love for end-of-life issues to have informed choices.

“I don’t have a terminal disease but I have an advanced life care directive in place.

“My doctor has got a copy; this is probably a little bit touchy at the moment, but mine is actually up on the [My Health Record] healthcare site … so that any hospital in Australia can access my directive.”

The dying space

The main thing Ms Barnsley wants people to know is that death doesn’t have to be impersonal and there is no prescribed process to follow.

“You don’t need a funeral home, and some people don’t even know that,” she said.

“You may need to get one to transport someone, but you can have a loved one at home, you can organise transport straight to burial or cremation or whatever the person’s choice is.

“[In the past] a family did care for loved ones dying; it wasn’t in a hospital, it wasn’t medicalised, it wasn’t institutionalised and that was the norm.

“But there became a fear factor with death; let’s take it behind closed doors, we don’t talk about it, and there’s still people within our community that still have that.”

Melbourne death doula Bonita Ralph says talking about death is important.

Bonita Ralph first came into contact with doulas when she was pregnant with her first child.

Years later she read an article about the work of death doulas and realised it was a similar concept.

“For me it was a very lightbulb moment where I went, ‘Oh my God, of course that’s the same thing’,” she said.

“It’s the same sort of energy, the birthing space and the dying space.”

Ms Ralph comes from a community welfare and social justice background and sees the work of a death doula as an “in-between role” to help bridge the gap between the medical system and the community.

“I think a lot of people think that when you’re a doula, you’re sitting at the bedside of someone who is dying, and that hasn’t been my experience yet,” she said.

“I think that may come, it may not, and that’s OK because I think the doula role, for me, is broader than that.

“A doula is a companion, someone to walk with you, someone to support you in your choices and that absolutely applies to end-of-life care and death.”

Know your choices

Ms Ralph said one of the best things people could do was spend time reflecting on their own experience with death and understand where their knowledge about death comes from.

“I think we’re moving really slowly towards acknowledging that if we don’t have role models and experiences, then we actually don’t know what to do,” she said.

“They need to know that it’s not illegal to take someone who has died home. It’s not illegal to organise your own funeral. You don’t need a funeral director. It’s a lot of work and maybe I wouldn’t suggest it; logistically it’s tricky, but it’s not impossible.

“People do dig their own graves, the graves of family members. That is not impossible. There are options out there.”

Ms Ralph said these options would not be for everyone, and while Australia was blessed to have a good medical system, it was important to know your choices.

“I don’t want people to feel like they’re being forced or that there’s a right or wrong way to do death,” she said.

“Death is so important because if you don’t offer good support, if you don’t offer genuine response to what that family needs, there’s going to be complicated bereavement results because people don’t move through and grow with their grief. They can get stuck.”

She said often people found it easier to talk openly about death with a doula, but she always encouraged people to have those same conversations at home so their next of kin understood their wishes.

“Talking about death is not weird. It’s important.

“Ask anyone who has had to work through a complicated death process such as a tragic death or complicated families or someone has died and left everything undone and the family has to pick up the pieces.

“Have these conversations when you’re young and well and alive and engaged, and have these conversations ongoing because things change. Relationships change. Expectations change. So don’t be afraid and keep having that conversation.”

Events are being held across Australia on August 8 for Dying to Know Day, which aims to start conversations around death, dying and bereavement.

For more information and to find events near you visit the Dying to Know Day website.

Complete Article HERE!

What does it mean to have a ‘good death’?

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What do you see when you picture an ideal death?

Are you surrounded by friends and family members, or is the setting more intimate? Are you at a hospital or at home? Are you pain-free? Were you able to feed yourself up until your death? Is there a spiritual element to your experience?

“We talk about personal medicine, but there should be personalized death too,” said Dr. Dilip Jeste, director of the Sam and Rose Stein Institute for Research on Aging at UC San Diego School of Medicine. “Finding out what kind of death a person would like to have should not be a taboo topic.”

To help open up the conversation in our death-phobic culture, Jeste and his colleagues are working on a broad definition of a “good death” that will help healthcare workers and family members ensure that a dying person’s final moments are as comfortable and meaningful as possible.

“You can make it a positive experience for everybody,” Jeste said. “Yes, it is a sad experience, but knowing it is inevitable, let us see what we can do that will help.”

The group’s first step was to look at previously published studies that examined what constitutes a good death according to people who are dying, their family members and healthcare workers.

The results were published this week in the American Journal of Geriatric Psychiatry.

The researchers searched through two large research databases — PubMed and PsycINFO — but they were able to find only 36 articles in the last 20 years that were relevant to their work.

Jeste said the lack of studies on a good death was not surprising.

“We don’t want to deal with unpleasant things, and there is nothing good that we associate with death, so why do research on it?” he said.

The articles the team did find included studies done in the United States, Japan, the Netherlands, Iran, Israel and Turkey.

From these, they identified 11 different themes that contribute to successful dying including dignity, pain-free status, quality of life, family, emotional well being, and religiosity and spirituality. Also on the list were life completion, treatment preferences, preference for dying process, relationship with healthcare provider, and “other.”

The authors report that the most important elements of a good death differ depending on whom you ask, but there was agreement on some of them.

One hundred percent of patients and family members as well as 94% of healthcare workers said preference for the dying process — defined as getting to choose who is with you when you die, as well as where and when — is an important element of a successful death.

There was also widespread agreement that being pain-free at the time of death is an important component of successful dying. Ninety percent of family members, 85% of patients and 83% of healthcare workers mentioned it across the various studies.

Religiosity and spirituality — meeting with clergy, having faith, and receiving religious or spiritual comfort — appeared to be significantly more important to the definition of a good death by those who were dying than to family members or healthcare workers. The authors report that this theme was brought up by 65% of patients, but just 59% of healthcare workers and 50% of family members.

Family members were more concerned with the idea of dignity –defined here as being respected as an individual and having independence — at the end of life than either healthcare workers or patients were. The idea that dignity was an important element of a good death was brought up by 80% of family members, but just 61% of healthcare workers and 55% of patients.

Similarly, having a good quality of life –meaning living as usual, and believing life is worth living even at the end– was listed as an important part of a good death by 70% of family members, but just 35% of patients and 22% of healthcare workers.

“For a dying person, the concerns seem to be more existential and psychological and less physical,” Jeste said.

And here the authors see a call to action.

“Although it is important that we attend to the patient’s physical symptoms… it is crucial that the healthcare system… more closely address psychological, social and spirituality themes in the end-of-life care for both patients and families,” they write.

They also say this work is just the start of a much longer conversation.

Jeste hopes that one day terminally ill patients might receive a checklist that will help them think about and express what they consider a good death so that family members and healthcare workers can help them achieve it.

“We are not just interested in research,” Jeste said. “We are interested in improving well being.”

Complete Article HERE!

How to honor and execute a loved one’s wishes is a conversation worth having

By Judson Haims

While I enjoy almost every day of my job, I am often faced with formidable challenges. One of the most difficult challenges I encounter is discussing plans for end of life with family members, clients and my contemporaries.

During the course of life, most people are required to handle many stressful situations. One of the most stressful and life altering is dealing with the passing of a loved one. Even when families have had the forethought to discuss a shared plan and how to honor and execute the loved one’s wishes, managing emotions, fears and anxieties of family and friends can be tenuous.

When a loved one’s life nears its end, so many areas need to be addressed. Often, it is easy to become overwhelmed and, thus, become immobilized. However, for those who have chosen to accept that the end will eventually come and have taken the time to develop a thoughtful plan, much emotional pain can be spared.

Some of the specific topics that need to be addressed in developing a plan include:

“It is obviously one thing to write about what you should do to initiate these difficult, but necessary, discussions. However, it is quite another issue to face the reality of what to actually say when you are facing a loved one and thinking about how best to break the ice with the topic of death and dying.”

  • Where does the person wish to die, at home, a nursing home, hospital?
  • Who will be a caregiver until the very end? Will it be a family member or friend? Will they have the fortitude to assist properly? Will it be a homecare agency or hospice?
  • What do they want as far as medical intervention, and who is going to make sure the passing person’s wishing are going to be honored and run as smoothly as possible? (Don’t assume a spouse or child will be the best choice.)
  • Establish advanced directives and medical and financial powers of attorney.

For those who have not yet had to experience end-of-life discussions and planning, you will eventually. Don’t shy away from the hard discussions.

It is important to make time and find a place to begin discussions revolving around end-of-life issues. Maybe a group situation might make it easier, such as during a time when families gather together. These conversations can benefit from the “safety in numbers” theory and tend to be more philosophical than one-to-one situations.

Generally speaking, there are four steps to expressing end-of-life wishes:

1. Ask the right question.

2. Record those answers.

3. Discuss among the pertinent people (i.e., family members, loved ones, doctors, attorneys, etc.).

4. File documents. Make certain the important documents are filed on your computer, given to medical providers, family and anyone else who may be involved in advocating.

For those who would like to learn about which documents should be in place when planning for end of life, here are some to consider: advanced directives, living wills, medical durable power of attorney and do not resuscitate orders. Here in Colorado, the Colorado Advance Directives Consortium has made available a document called the Medical Orders for Scope of Treatment, which is designed to help you convey what your wishes are for medical care at the end of your life.

It is obviously one thing to write about what you should do to initiate these difficult, but necessary, discussions. However, it is quite another issue to face the reality of what to actually say when you are facing a loved one and thinking about how best to break the ice with the topic of death and dying.

Should you choose to further educate yourself, there are a number of resources available to assist in starting a conversation: Conversation Starter Kit (the conversationproject.org), Aging with Dignity (www.agingwith dignity.org) and Take Charge of your Life (www.takechargeofyour life.org) are just a few that you may want to look into.

When end-of-life discussions take place among doctors, family and patients, all the participants tend to feel better. Medical treatment is usually handled with more professionalism and is more effective. And, perhaps the most difficult to measure, the stress of such a difficult situation is drastically reduced.

Complete Article HERE!

Men Less Likely to Prefer Palliative Care Treatment at End of Life

“If there is a ‘war’ on cancer, and treatments and hopes for cures are portrayed as ‘fights’ in media, then societal beliefs may push men, in particular, to fight the disease over receiving palliative care,”

The bad of the unintended consequences cannot outweigh, or be greater than, the intended good outcome.

By Leah Lawrence

A small study has found that men with cancer were less likely than women to prefer palliative care if informed that continued treatment would not be helpful.

“These findings, which could partially account for the observed gender disparities in end of life care, underscore the need for future interventions to promote palliative care services among men,” Fahad Saeed, MD, University of Rochester School of Medicine and Dentistry, and colleagues wrote in the Journal of Pain and Symptom Management.

Prior research had shown that men and those with low educational attainment are more likely to still be receiving “curative” treatments weeks prior to death and are less likely to undergo palliative care or hospice. With this study, Saeed and colleagues hypothesized that these two groups would be less favorably disposed toward palliative care.

To test this hypothesis, they used data from 383 patients that were gathered in the Values and Options in Cancer Care (VOICE) study. In this study, patients were asked about their preferences for palliative care if they had been informed by their oncologist that further treatment would not be helpful. Palliative care was explained to the patients as care intended to provide comfort and improve the quality of life but not to cure.

Included patients ranged in age from 22 to 90 years, and 55.1% were women. The majority of the patients had also attended college.

Almost 80% of patients reported that they definitely (45.2%) or possibly (33.9%) would desire palliative care if informed that further treatment would not be helpful.

Women were about three times more likely to prefer palliative care compared with men (odds ratio [OR] = 3.07; 95% CI, 1.80–5.23). These odds decreased slightly in sensitivity analyses that accounted for additional covariates and ordinal regression.

“These gender differences may be explained by gender differences in role socialization,” the researchers wrote. “Men and women adopt beliefs about gender roles that reflect prevailing social norms. These beliefs guide decisions about socially acceptable and unacceptable attitudes such as being stoic, fearless, less expressive of symptoms, and invulnerable.”

“If there is a ‘war’ on cancer, and treatments and hopes for cures are portrayed as ‘fights’ in media, then societal beliefs may push men, in particular, to fight the disease over receiving palliative care,” they continued.

In contrast, the data did not support a greater preference for palliative care among those with more education. Patients with a high school education or less and those with a college education had comparable preferences for palliative care.

“It is not very likely, therefore, that education disparities in end-of-life care can be explained by education differences in preferences for palliative care,” the researchers wrote.

In addition, the study showed that older adults were less likely than younger ones to prefer palliative treatment (OR = 0.54; 95% CI, 0.31–0.94). To explain this, the researchers suggested that older patients may have a lack of knowledge about palliative care.

“In a survey of patients across the adult age range, more than three-quarters of the sample had never heard of palliative care,” Saeed et al said.

I Know You Love Me — Now Let Me Die

A physician laments the often-excessive care of older adults at the end of life

By Louis M. Profeta, M.D.

In the old days, she would be propped up on a comfy pillow, in fresh cleaned sheets under the corner window where she would, in days gone past, watch her children play. Soup would boil on the stove just in case she felt like a sip or two. Perhaps the radio softly played Al Jolson or Glenn Miller, flowers sat on the nightstand, and family quietly came and went.

These were her last days. Spent with familiar sounds, in a familiar room, with familiar smells that gave her a final chance to summon memories that will help carry her away.

She might have offered a hint of a smile or a soft squeeze of the hand but it was all right if she didn’t. She lost her own words to tell us that it’s OK to just let her die, but she trusted us to be her voice and we took that trust to heart.

A day does not go by where my partners don’t look at each other and say, “How do we stop this madness?”

You see, that’s how she used to die. We saw our elderly different then.

Still the Same Person

We could still look at her face and deep into her eyes and see the shadows of a soft, clean, vibrantly innocent child playing on a porch somewhere in the Midwest during the 1920s perhaps. A small rag doll dances and flays as she clutches it in her hand. She laughs with her barefoot brother, who is clad in overalls, as he chases her around the yard with a grasshopper on his finger. She screams and giggles. Her father watches from the porch in a wooden rocker, laughing while mom gently scolds her brother.

We could see her taking a ride for the first time in an automobile, a small pickup with wooden panels driven by a young man with wavy curls. He smiles gently at her while she sits staring at the road ahead; a fleeting wisp of a smile gives her away. Her hands are folded in her lap, clutching a small beaded purse.

‘Enriched and Happy’

We could see her standing in a small church. She is dressed in white cotton, holding hands with the young man, and saying, “I do.” Her mom watches with tearful eyes. Her dad has since passed. Her new husband lifts her across the threshold, holding her tight. He promises to love and care for her forever. Her life is enriched and happy.

We could see her cradling her infant, cooking breakfast, hanging sheets, loving her family, sending her husband off to war, and her child to school.

We could see her welcoming her husband back from battle with a hug that lasts the rest of his life. She buries him on a Saturday under an elm, next to her father. She marries off her child and spends her later years volunteering at church functions before her mind starts to fade and the years take their toll and God says: “It’s time to come home.”

Adding Time but Not Life

This is how we used to see her before we became blinded by the endless tones of monitors and whirrs of machines, buzzers, buttons and tubes that can add five years to a shell of a body that was entrusted to us and should have been allowed to pass quietly propped up in a corner room, under a window, scents of homemade soup in case she wanted a sip.

You see now we can breathe for her, eat for her and even pee for her. Once you have those three things covered she can, instead of being gently cradled under that corner window, be placed in a nursing home and penned in a cage of bed rails and soft restraints meant to “keep her safe.”

She can be fed a steady diet of Ensure through a tube directly into her stomach and she can be kept alive until her limbs contract and her skin thins so much that a simple bump into that bed rail can literally open her up until her exposed tendons are staring into the eyes of an eager medical student looking for a chance to sew.

She can be kept alive until her bladder is chronically infected, until antibiotic resistant diarrhea flows and pools in her diaper so much that it erodes her buttocks. The fat padding around her tailbone and hips are consumed and ulcers open up, exposing the underlying bone, which now becomes ripe for infection.

‘We Stopped Seeing Her’

We now are in a time of medicine where we will take that small child running through the yard, being chased by her brother with a grasshopper on his finger, and imprison her in a shell that does not come close to radiating the life of what she once had.

We stopped seeing her, not intentionally perhaps, but we stopped.

This is not meant as a condemnation of the family of these patients or to question their love or motives, but it is meant be an indictment of a system that now herds these families down dead-end roads and prods them into believing that this is the new norm and that somehow the old ways were the wrong ways and this is how we show our love.

A day does not go by where my partners don’t look at each other and say, “How do we stop this madness? How do we get people to let their loved ones die?”

I’ve been practicing emergency medicine for close to a quarter of a century now and I’ve cared for countless thousands of elderly patients. I, like many of my colleagues, have come to realize that while we are developing more and more ways to extend life, we have also provided water and nutrients to a forest of unrealistic expectations that have real-time consequences for those frail bodies that have been entrusted to us.

A Slow, But Enormous Change

This transition to doing more and more did not just happen on a specific day in some month of some year. Our end-of-life psyche has slowly devolved and shifted and a few generations have passed since the onset of the Industrial Revolution of medicine.

Now we are trapped. We have accumulated so many options, drugs, stents, tubes, FDA-approved snake oils and procedures that there is no way we can throw a blanket over all our elderly and come to a consensus as to what constitutes inappropriate and excessive care. We cannot separate out those things meant to simply prolong life from those meant to prolong quality life.

Nearly 50 percent of the elderly U.S. population now die in nursing homes or hospitals. When they do finally pass, they are often surrounded by teams of us doctors and nurses, medical students, respiratory therapists and countless other health care providers pounding on their chests, breaking their ribs, burrowing large IV lines into burned-out veins and plunging tubes into swollen and bleeding airways.

‘What in the Hell Were You Thinking?’

We never say much as we frantically try to save the life we know we can’t save or perhaps silently hope we don’t save. When it’s finally over and the last heart beat blips across the screen and we survey the clutter of bloody gloves, wrappers, masks and needles that now litter the room, you may catch a glimpse as we bow our heads in shame, fearful perhaps that someday we may have to stand in front of God as he looks down upon us and says, “What in the hell were you thinking?”

When it comes time for us to be called home, those of us in the know will pray that when we gaze down upon our last breath we will be grateful that our own doctors and families chose to do what they should instead of what they could, and with that we will close our eyes to familiar sounds in a familiar room, a fleeting smile and a final soft squeeze of a familiar hand.

Complete Article HERE!

Professional death coaches: A new type of doula

Two B.C. women Explore the sacred journey between life and death

Alison Moore and Sue Berlie

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Death is no stranger to two Okanagan women, who have guided their loved ones through the unique journey.

What’s new, however, is their growing role in helping the wider community embrace a different kind of death experience.

“There’s a lot of paradigm shift(ing) happening right now, people want to talk about it,” said Sue Berlie, shamanic coach, death walker and psychopomp.

Berlie, alongside Alison Moore, a life-cycle celebrant and sacred passages doula are also both trained as home funeral guides through the Canadian Integrative Network for Death Education and Alternation (CINDEA). They are also facilitators of the Okanagan Death Cafe.

Celebrant Alison Moore

Death Cafes were created in 2004 and has spread around the world. The events offer unique opportunities for conversations about death, the dying process and preparation to be had. Through guided in-depth conversations with each other, participants find solace and a new understanding of a usually taboo subject. Currently, 6,588 Death Cafes have been hosted in 56 countries.

Berlie and Moore were drawn the worldwide Death Cafes because of their grassroots nature, and the high demand for people wanting to get more involved with the death and caring of their friends and family. They were also getting sick of the current “business” of dying.

“A lot of people want to die at home and aren’t given that opportunity, and when they do (die at home) we don’t let them lie there and have their friends and family come in where we can hold services … rather, the person dies and has been whisked off to a funeral home and everyone has been left there with a void,” Moore said.

Funerals cost somewhere between $1,000 to $12,000 according to Canadian Death Services Online , and B.C. currently has the highest rates for cremation in Canada.

Seventy per cent of North Americans prefer to die at home, and only seven per cent said they wanted to die in a hospice or palliative care home, in a survey conducted by Donna Wilson, at the University of Alberta. Wilson also teaches nursing and researches dying in Canada and the survey also found that 60 per cent of Canadians actually die in hospital and 10 per cent die in nursing homes.

Outside of religion, rituals to be held after death are lacking and that’s become a problem.

“People are having a deeper experience when helping and preparing for death, part of what we are excited about is helping people grieve well. You should die well and grieve well,” Moore said.

Moore’s education in the world of death and dying began when she found out she was expecting her first child and her best friend was diagnosed with stage four breast cancer.

 

“Here I was gestating life and my best friend was given three to six months to live. She ended up living on Elisabeth Kübler-Ross’ farm (a pioneer in near-death studies and author of On Death and Dying) and becoming one of the subjects in her book. She brought us on this journey of spiritual exploration with her,” Moore said.

Talking about death and dying hasn’t been difficult since that perspective-shifting experience. Now as a celebrant, Moore “marries and buries” people, guiding them through different life-changing experiences; the birth of a child, officiating marriages and officiating funerals.

Moore is now a certified death doula whose first guided her father through death.

“It was very interesting being on the inside, as a daughter, and being the person that was trying to hold space for the person I was caring for — it was an extraordinary experience. We are trained to focus on the person we are caring for, providing them with a beautiful quality of life and death. We are of service to the path that the person is taking, and it is a sacred one.”

Berlie, a psychopomp (a guide of souls to the place of the dead) takes a different spiritual journey in her work. There is no general scenario, as she works on a case by case basis. She can be there during a death, after, or if asked by a family member or the person who is dead to ensure their spirit is not trapped. Berlie also facilitates conversations, ceremonies and rituals. Berlie calls it dreaming themselves into their next life.

“It will always depend on what people believe, you have to stay within their beliefs, you cannot introduce anything. It is about them and what they want,” Berlie said. “Dreaming into what is next, is more of a conversation and I see that with the more Death Cafe’s we hold, the more people become open to other things and they start to explore within themselves wondering “well maybe my body doesn’t just shut down and that’s it for my spirit.””

Sue Berlie

Berlie works alongside spirit guides, spirit animals and the realms to help spirits continue onto the journey of what is next.

Her work began when she was 18 years-old and her best friend died suddenly in a car accident.

“He stood there clear as day and talked to me the night he died— I later went to a psychic 30 years later and she said “Oh who is that over your left shoulder? You have a bright gold orb hovering there, he hasn’t left your side.” It was my friend and he didn’t realize he was dead. He is my spirit guide and I believe he helps me in my work.”

Berlie later volunteered at a hospice and found she was not able to help people in their last stage of life in the way she felt compelled to. She changed her career in order to strengthen her ability as a psychopomp by becoming a shamanic practitioner, and certified death walker. Shamanic practitioners are healers who move into an altered state of consciousness to access a hidden reality in the spirit realms with the purpose of bringing back healing, power and information.

As a death walker Berlie accompanies people as the go onto their journey towards death, nurturing, enhancing and strengthening the capacity of the person about to die. While providing legal and practical knowledge to them and the family.

The next Okanagan Death Cafe series has yet to be scheduled but the women have decided to host them bi-monthly instead of annually to accommodate and continue the conversations around death and dying.

“What I would like to see and what is beginning in these dialogues on death and dying is, that people are opening up to the fact that the one thing we know when we are born is that we are going to die. We need to start embracing in our daily lives, because each day is a gift,” Alison Moore said.

For more information, or to find a Death Cafe near you please visit www.deathcafe.com

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