Month: July 2021

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What happens when someone is dying?

Dying is unpredictable. It is not always possible to know for sure that a person is in the last days of life, predict exactly when a person will die, or know exactly what changes the person you are caring for will experience when they are dying.

However, there are certain bodily changes that show a person is likely to be close to death. It is normal for these signs to come and go over a period of days, and if they do go, this does not usually mean that the person is recovering.

Some of these changes may be distressing, but it can be reassuring to know what to expect and how to help. Signs that a person may be dying can include:

By clicking on the links above you can find out more about these changes and whether there is anything you can do to help.

The links below give more information and practical advice relating to other concerns or questions that might arise:

More information about support available and what to do after a death is available at the links below:

Thanks to the National Council for Palliative Care, Sue Ryder and Hospice UK for their kind permission to reproduce content from their publication What to expect when someone important to you is dying, which can be downloaded or purchased from the Hospice UK website.

Complete Article ↪HERE↩!

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Scientists Monitored 631 People As They Died.

This Is What They Found

The largest international study of the physiology of death to date shows that death is “more of a continuum than the flipping of a switch.”

By Eleanor Cummins

The living have always worried about the dead coming back to life. It’s the plot of the New Testament, the reason 19th century families installed bells in their loved one’s coffins, and a source of tension in end-of-life care today.

While doctors work to reassure families holding vigil in intensive care units and hospice facilities that the end has indeed come, death remains something of a mystery—even among medical researchers. 

These unresolved questions around things like brain death, cardiac death, and more have led to the proliferation of “myths and misinformation,” said Sonny Dhanani, chief of pediatric intensive care at the Children’s Hospital of Eastern Ontario. 

“We felt [stories about the dead coming back to life] might have been impacting people’s motivation to consent for their loved one to be a donor, and for the medical community to offer, donations,” he said. “We wanted to provide scientific evidence to inform the medical understanding of dying.”

In a new study, published Thursday in the New England Journal of Medicine, Dhanani and his team report the results of the largest international study into the physiology of dying to date. It suggests the living can rest easy, kind of.

Between 2014 and 2018, the researchers observed the heart function of 631 patients in 20 adult intensive care units in Canada, the Czech Republic, and the Netherlands after they were taken off life support. The scientists found that 14 percent of the dead showed some flicker of cardiac activity—measured by the electrical activity of the heart and blood pressure—after a period of pulselessness.

But the doctors at the patient’s bedside never got a determination of death wrong. “No one lived. Everyone died. No one actually came back to life,” Dhanani said.

The sputtering was short-lived—the furthest cardiac activity came just 4 minutes and 20 seconds after their heart initially stopped beating—and not strong enough to support other organs, like the brain. 

The data “help us understand how to medically define death, which is more of a continuum than the flipping of a switch,” according to Joanna Lee Hart, a pulmonary and critical care physician and assistant professor at the University of Pennsylvania’s Perelman School of Medicine.

“Our bodies are physiologically designed to stay alive… As our bodies try to keep us alive, they will pump out natural chemicals to sustain life as long as possible,” Hart wrote in an email to Motherboard. But, she added, “Once the dying process starts, it is very hard to return a person’s body back to a condition where the person can survive.”

This should be comforting to families and medical providers. Among other things, the research affirms that current practices, which typically tell doctors to wait 5 minutes after the pulse stops to name a time of death, are working. At that point, things like organ retrieval are safe to start.

While there are still plenty of questions about death, dying, and the afterlife, this study—which is unlikely ever to be repeated, given its scope—is something close to the definitive word on the question of the post-mortem cardiac activity.

“Determining death is so emotional to everyone,” Dhanani said. “We hope that rigorously studying death and dying, not being afraid of that conversation, will help.”

Complete Article ↪HERE↩!

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How to support children through grief and bereavement

By

When it comes to casual conversation, death understandably very rarely comes up as a subject that we jump at the chance of openly discussing.

Yet, it appears the coronavirus pandemic has made us all more aware of our own mortality and the mortality of those around us. Research by Dying Matters, a campaign group working to create an open culture around death and dying, found that nearly a quarter of UK adults (24%) say that the pandemic has made them more likely to have casual conversations with family and friends about preferences around their death.

While adults are potentially seeing the pandemic as a way to be more open about death, be that from coronavirus or other illnesses, one group is continually overlooked: children. Figures from Child Bereavement UK show that a child loses a parent every 22 minutes in the UK, equating to around 111 children being bereaved of a parent every single day.

During the pandemic and beyond, children have not just lost parents; they are also having to deal with grandparents, family friends, teachers and even siblings dying. Campaign groups and charities are working to help identify bereaved children and offer them the support they need, whether the bereavement is due to coronavirus or any other type of illness or injury. It’s now becoming apparent that we need a shift in public discourse, education systems and possibly even legislation in order to help bereaved children feel acknowledged and safe.

The current situation

The Childhood Bereavement Network analyses data from sources like the Office for National Statistics and uses its own research to estimate that 1 in 29 five to 16-year-olds has been bereaved of a parent or sibling – equating to a child in every average school class. “Unfortunately, there are no official figures on how many children are bereaved of a parent,” says Di Stubbs, a bereavement practitioner for charity Winston’s Wish. “A study has shown that 78% of children in the UK say they have experienced a ‘significant bereavement,’ showing that our children are very aware and affected by the mortality of those around them.”

Charities like Winston’s Wish were seeing many children before the pandemic to help support them through bereavements, alongside working with adults who know bereaved children to offer advice on how to best help young people during periods of grief. While children were facing countless bereavements before coronavirus, the pandemic has undoubtedly exacerbated the situation. “COVID emphasised our natural assumptions,” says Di. “The children we work with fall into many different groups. We are dealing with children who have been bereaved due to coronavirus. We are also dealing with children who have experienced a loved one die due to other reasons over lockdown, as the same amount of people are still dying from health conditions like heart attacks and strokes.”

There’s also another group of children that is now finding grief to be an issue. “Children who were bereaved before the pandemic are now finding that the current situation has really highlighted these intense emotions,” explains Di. “Suddenly, everyone is talking about death and bereavement all the time. Even for children who are not grieving, many have been quite suddenly exposed to the fragility of life and are having to respond to a new world.”

children bereavement

Navigating a new world

Coronavirus, and the lockdowns implemented to curb the spread of the disease, have caused confusion for many children around dying. “All of the rituals surrounding death, like funerals, were suddenly not there anymore,” says Di Stubbs. “We saw extremely sad situations, like shielding grandparents trying to comfort children over the death of a parent, whose only option was to do this through a window as no contact was allowed.”

Roseleen Cowie, regional lead at charity Child Bereavement UK, echoes this sentiment. “The effects of the pandemic have caused further pain for children going through a bereavement,” she says. “Without the usual rituals, children cannot say goodbye when someone dies, which has added to the difficulty. This is superimposed on the grieving, resulting in an additional loss and some people expressing their grief more deeply than may have been expected.”

Shelley Gilbert MBE, founder of specialist bereavement service Grief Encounter, stresses the importance of supporting bereaved people during and after the pandemic. “COVID has stolen things away from most of us, some bigger than others,” she says. “If someone special dies for young people, they are gone forever, and we need to think about how we support children throughout this period.”

Understanding children’s grief

Children grieve in a similar way to adults, but with some noticeable differences. According to the experts, ‘puddle jumping’ is to be expected. “Puddle jumping is the process by which children move in and out of their grief,” explains Roseleen Cowie. “A child may be very upset one moment and perfectly alright the next. Being aware of that is really helpful for people, especially in schools, as you can then appreciate that this is the way that children grieve.”

Puddle jumping tends to be different to how adults experience dealing with grief. “Adults tend to wade through grief, but children do this much faster; cycling in and out of grief and oscillating much faster than adults,” Di Stubbs explains. However, in many ways, the features of grief in children and adults are very similar, if not the same. “We can’t expect children to grieve differently to adults,” says Di. “All that anyone can do when they are bereaved is experience whatever intense emotions they are feeling. Eventually, we all grow around grief, allowing ourselves to experience new adventures and have fun.”

children bereavement

Talking to children about death

Undoubtedly, the consensus from experts is that children need to talk about death. “We recommend people use words like ‘dying,’ ‘dead’ and ‘death’ around children so that they have a clear understanding of what this is, as they won’t understand euphemisms,” explains Roseleen Cowie. Di Stubbs notes that language is particularly important, as phrases like ‘heart attack’ won’t make sense to some children, who may instead become distressed at the thought of a loved one being attacked, rather than understanding this to be a medical term.

Another expert who stresses the importance of using the right language is Nima Patel. A qualified primary school teacher and conscious parenting coach, she began her business, Mindful Champs, to encourage the practice of mindfulness between parents and children. Her latest project, a grief journal for children, encourages them to express themselves in whatever ways they can after a bereavement. “In 2017, my father suddenly died,” Nima discloses. “Seeing people lose loved ones during the pandemic, I wanted to create a toolkit for children and young people that I never had,” she says.

Nima realised the importance of having honest and open dialogues with children around death by using language that they can understand. “Children will have so many questions around death, but adults often don’t know how to answer these,” she explains. “My aim is to help children develop language to express themselves, and encourage adults and children to voice their feelings. If emotions aren’t spoken about in the home on a daily basis, a lot of children don’t have the language needed for emotional events, like a bereavement.”

Many children may find they need professional support when they are bereaved, and adults and schools are able to refer children to charities like Child Bereavement UK, Grief Encounter and Winston’s Wish or to NHS services. The way in these organisations can support grieving children or adults who are concerned about bereaved children can take a multitude of forms, from offering helplines to one-on-one counselling sessions.

If you know a bereaved child, in addition to talking to them about their grief and emotions, another good way to help them express grief is through creativity. “Sometimes words are not enough to express our grief and this is where creativity comes in,” explains Shelley Gilbert MBE. “Being bereaved often means you haven’t the words to describe what you’re thinking or feeling. Old words have no meaning or take on new meanings and you’re learning words you’ve never heard before. Following the loss of someone special, we need a new language of grief.”

Creativity can come in many forms when expressing grief. Winston’s Wish encourages children to make memory jars or emotional first-aid kits, while there are also resources out there made specifically for grieving children, like Nima Patel’s Mindful Champs Grieving Journal. “We encourage activities like memory jars, flower releasing ceremonies and memorial trees in the journal to help children express their grief however they wish, be that verbal or non-verbal,” says Nima. Di Stubbs also recommends that books can be a great resource for children, including I Miss You: A First Look at Death and Goodbye Mousie to explain death to young children and Straight Talk about Death for Teenagers: How to Cope with Losing Someone You Love for teenagers. A further reading list is available at Winston’s Wish.

children bereavement

Assisting children with learning disabilities

For any child, dealing with grief can be tough, frightening and confusing. For children with learning disabilities, who may have acute difficulties expressing themselves, this can be a particularly hard time, especially during the pandemic. “We can’t emphasise enough the huge impact that the pandemic has had on children with learning disabilities,” says Tracey Hartley-Smith, a learning disability nurse and clinical lead at Cheshire and Wirral Partnership NHS Foundation Trust. “Coronavirus has impacted children’s opportunities for developing their social and communication skills hugely. We’ve seen through our work and heard from parents, carers and colleagues that children with learning disabilities have experienced heightened anxiety during this time.”

Tracey and her colleague, Dr. Jacqui Wood, a clinical psychologist at Cheshire and Wirral Partnership NHS Foundation Trust, have continued working with children with learning disabilities throughout the pandemic, including supporting them through grief and bereavement. “We encourage everyone interacting with a bereaved child to use the same, simple phrases when talking about death, as repetition is so important for consistency,” says Jacqui. “Visual aids, such as pictures or symbols, can often be helpful for sharing information with non-verbal young people, and helping them to express themselves,” she explains. Tracey adds that, as well as using the right language, “children with learning disabilities need to feel safe and loved, in whatever type of communication they use for this reassurance.”

Jacqui has recently published a guide specifically tailored for parents or carers of children with learning disabilities, which is accessible here. “Keep routines and boundaries, as they help establish predictability and security for children,” she advises. “Try to find opportunities to involve children in arrangements like funerals, to help develop their understanding of what has happened. Children with learning disabilities may also benefit from multi-sensory memory items, such as a piece of clothing from their loved one to touch and smell. This can help them learn to manage their expectations over time, so they adapt to remembering their loved one rather than physically seeing them,” she explains.

Jacqui also advises encouraging emotional regulation activities, be these for fun or relaxation. “Help children have fun during this difficult period by encouraging movement, whether that’s running around in the park or splashing about in the bath,” she says. “For calming sensory experiences, try dimming the lighting in your home, making a den to establish ‘quiet time’ or just comforting your child with regular hugs.”

children bereavement

Acknowledging and making memories

Above all, acknowledging that a child or teenager is grieving is incredibly important. Research by Dying Matters shows that 72% of those bereaved in the last five years would rather friends and colleagues said the wrong thing than nothing at all, and 62% say that being happy to listen was one of the top three most useful things someone did after they were bereaved.

“Above all, we should remember that love never dies,” says Shelley Gilbert MBE. “Lots of our work focuses on remembrance in difference ways, including remembering our loved ones as they were in the past and thinking about them in the present and future. When we make new memories, it can help to remember that our dead loved ones are with us in some way.”

When adults grieve, there is trauma and then a long road to acceptance. And, we should not assume that children and teenagers are any different. As Roseleen Cowie says: “When helping bereaved families, our ethos is that grief is a normal part of life: you can’t get over it or make it better, but you can learn to live with it.”

Complete Article ↪HERE↩!

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Planning for death can bring peace of mind

By: Cynthia Breadner

“All that lives must die, passing through nature to eternity.”
William Shakespeare, Hamlet, Act 1, Scene 2

Today is a day of earned celebration as Italy takes home the cup for their big win playing soccer, or as it is called elsewhere “football”. As I watch the news recounting the celebrations, it is with joy I watched people together in community with a common goal to be celebrating and sharing the love of a sport or activity. Being alone, or solo is not how we are meant to be. We are social beings and in the animal kingdom, this is evident when all things gather.

That said, as the pandemic has continued, our ability to watch or stream online programming at home offers so much entertainment people may not notice they are alone! One can feel they have friends when watching three, four, five, or even 10 seasons of a program all in one swoop. The characters become your friends. I remember a fantasy movie from my childhood or youth, where a person is standing before a wall of screens and has a script in their hand. They are an actor in a drama from their own living room. That is all I remember and if anyone can identify this drama, I would love to know the name of it. Regardless of that, our choices of entertainment with the addition of NetFlix, Amazon Prime, CTV streaming, GlobalTV streaming, and CBC GEM no one can say they are bored. The world is one’s oyster searching for that pearl of enjoyment. Is this good? I am unsure. Entertaining, yes! Good? My jury is still out.

One of the downsides to so much viewing entertainment, I find my body is stiff. My back and sit muscles sometimes feel the stress of sitting in one place for too long. Evidence that I watch too much! However, I wonder what else can I do in a time where we are constantly threatened and reminded to keep our distance. It seems we are pushed into a solitary life. The chair where I sit has become my friend and my place of comfort and a companion that feels safe and easy. This action in my life is a reminder of when my mom died, and we cleaned out the house where she had lived for over 40 years. I took the sofa she had purchased recently for my own new apartment. I had lived in one room with a bed, out of my car, and transient for a few years going to school and ended it with staying with her in my childhood home, providing companionship and care. In the fall of 2009, I was heading to Toronto to begin the Masters program and as a family, we decided to prepare mom for a move into formal care in the fall when I moved to the city. I was 50 years old that summer and, with grown adult children, was quite alone in the world. As the youngest child of my mother, I was the only one able to live with her and not leave others alone at home. My self-discovery in this journey was huge.

I discovered how much my mother depended on the television as her entertainment and this was pre-streaming, pre-NefFlix, pre-online. She had a satellite dish so was blessed with many choices, yet she always landed on the same programs. The couch I sat on in my new apartment always transported me back to the vision of her perched on the edge watching her “story” (The Young and the Restless), ready at a commercial, to fly out of the room and peel the potatoes or stir the soup. This newer sofa replaced one that had broken down in the one spot where she sat. This new sofa had the indent of her bottom ever so lightly that it gave me comfort. I could believe her spirit was sitting there making this indent long after she was gone. Little did I realize how much I would miss her when she was gone. I was warned. A warning I did not take to heart. I ignored it and guffawed at the possibility I would never miss my mother, I said, rolling my eyes. That said, after her death and 12 years later I still miss her so much.

This sofa represented her alone time after dad died. It also represented the years before he died. The times where she felt so guilty watching TV when she thought she should be busy with something else. The hours she watched and enjoyed this new type of entertainment that came to her later in life. Mom and dad did not even have a television until the late ’50s and so for her, it was still a novel idea and something new! As I looked at the sofa now in my living room I could return to my vision of her perched on the sofa watching her favourite programs. On the 26” floor model console along with her story, she watched Wheel of Fortune and Jeopardy. She caught up on the news and her favourite in later years was Reba and Everybody Loves Raymond. I can remember and see her watching The Price is Right every morning from 11 – noon and just when the winner of the showcase was announced she would jump up and fly out to the transistor radio on the kitchen counter and turn it on to hear the funeral announcements from CFOS in Owen Sound. If there were any, they would be announced precisely at 11:56 a.m. right before the noon news. Her timing was impeccable, and her routine was solid. As she listened dad would slide open the patio screen door or push open the sticky wooden door coming from the “back” kitchen, home for lunch from the apple orchard. He would hang his hat on the same peg, sit in the same chair, and lunch prayers would be said over a sandwich and a coffee.

We moved to the house in Heathcote in 1970 when I was 11 years old. My mom and dad both died while living there. Mom’s last days were the same routine even though she could no longer jet from the television room to the radio she still managed to time it right, so she never missed the funeral announcements. She would push her walker out to the kitchen during the last commercial break at about 11:45 of The Price is Right, return and watch the end of her show, then as the music started indicating the announcements, she would push her walker back out to the kitchen and listen as she slowly walked. I often wondered if she pined to hear her own name to escape the loneliness. Both she and dad died in LTC very shortly after leaving this home. My dad died within three or four months of moving and mom was only officially there for three weeks. While mom was able to watch her favourite programs in her last days, she did so while staring out the window into a parking lot, sharing a room with a stranger. They stayed in their home for as long as we thought possible. I see now with what I know, they could have both stayed at home longer if I knew then what I know now.

As I watch my own favourite programs and sit in the quiet of my solitary life, and I wonder what my third trimester will look like. I feel closer to my parents and my older siblings as we all age. Fear sets in as I interact in LTC with all the aging and watch their lives in our current care pattern. Each and every person has my mother’s face and I spend quality time caring for them with a gentle voice and a song if they cannot talk to me, I sing to them. I wonder what care will look like in 25 years when I need it. What I do know is something must change, I am just not sure how to change it. How do you turn the Titanic? We all know that story and our elder care system is the Titanic, quietly cruising in the dark, straight towards disaster because no one knows how to fix it. I do my part staying the course and will go down with the ship, because this ship will go down, taking the frail, the elderly, and the delirious with it.

To not leave this pondering in such a dark place I want to offer some hope. Hope begins with the family unit. How does one die at home? With planning and care. With a community of care and conversation. I was afraid and I was angry when my parents needed me. I thought my life was more important than their last few years. I wish now I had given what was needed to make their last days as beautiful as I could. That said, I want to help others plan for end of life. As we plan for the birth of a baby with joy and beauty, we can do the same for the birth of a soul into the next life. Letting go and the best care possible is at hand. The current system is broken, so be the change you want to see in the world, begin now to plan for your own end of life, and talk with your aging loved ones about what to do when their time comes. If I can do nothing else but bring awareness to choose education and passion around end-of-life care I will be happy. There is always a choice, and good planning for a good death brings joy and peace in the years to come. As the next few years of an aging population who will be demanding and more financially prepared than ever before, let’s work together to make a good death possible. It is not “if” we die it is “when” we die, and embracing death as the next adventure and heading there with acceptance and joy is how life can be lived fully. Our lives are a program that will be in reruns in the memories of those who knew us. When they watch will they watch with love or regret? Be the director of your own movie and make it a love story to be remembered and have people watch it so often they leave a dent in the couch where their bum has been.

Complete Article ↪HERE↩!

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A matter of life and death, again and again

By Jack Cameron Stanton

FICTION
Should We Stay or Should We Go
Lionel Shriver
Borough Books, $29.99

Is life, no matter its quality, sacrosanct? In 2018, Aurelia Brouwers, a 29-year-old girl, caused controversy by ending her life legally in the Netherlands. Her case was anomalous: she did not suffer from a terminal illness, rather struggled with a history of mental illnesses, suicide attempts, self-harm and psychosis.

Assisted-dying remains a fiercely contested area in global euthanasia laws, belonging to the interdisciplinary branch of ethical discourse known as bioethics, which debates the value of human life. With the advances in modern medical knowledge, the global average life expectancy has increased to 72.6 years, up from 65.3 in 1990, as estimated by the United Nations.

And the transhuman movement, which advocates the research and development of human-enhancement technologies, theorises that near-future breakthroughs will extend human lifespans indefinitely.

In Should We Stay or Should We Go, Lionel Shriver, best known for We Need to Talk about Kevin, confronts the issue of assisted-dying and euthanasia when her protagonists Kay and Cyril Wilkinson propose “that we get to 80 and then commit suicide”. They are not suffering unbearably when they make the decision; in fact, they’re in their mid-50s, and in excellent health. Their reasoning is simple: humans were never meant to live beyond 80, and they ought to die on their own terms, before they succumb to the entropy of their biological clocks on borrowed time.

The novel’s departure point is March 29, 2020 – the day of Kay’s 80th birthday. After the “giddy, mind-racing rush to capitalise on time remaining”, the world has unexpectedly changed. Brexit reignited Cyril’s fierce anti-leave sentiment, and coronavirus turned Britain into a ghost land. As a result, Kay and Cyril appraise the lethal pills before them and begin to soliloquise about death in a corollary of Hamlet’s “to be, or not to be”. Problem is that as octogenarians, they remain in good health, not the mindless or stupefied walking corpses they feared they would become.

From here, Shriver disrupts the narrative with multiple scenarios that imagine what Kay and Cyril do next. Using this non-linear structure, Shriver creates a novelistic thought experiment, a network of possibilities, with each chapter reverting in time to choose a different path.

Kay goes ahead, Cyril backs out, and soon has a stroke that imprisons him inside his own body. Advances in medicine produce a magic pill that reverses ageing and allows people to live at optimal youth indefinitely. Their children, aghast that their parents planned suicide, and had squandered their inheritance, subject them to a cruel assisted-living home. Kay succumbs to dementia, and her family grieves as if she’s already dead.

For a while, banal subplots and dialogue about the burden the old place on Britain’s health system ride the coattails of a clever structural design. Cyril finally gets around to penning his memoirs, in which he writes at length about Brexit, the NHS, and why any responsible person should end their own life before becoming “fiscally ruinous”.

Kay and Cyril die many times, but never die. Each chapter resurrects them at a particular point in the preceding narrative and allows them to choose a different path. The result is that we feel trapped in a time-warp, reliving moments ranging from the banal to the dramatic. There’s something cavalier, even irresponsible, about the idleness with which Kay and Cyril discuss their exit plan, as beholden to a kind of botched utilitarianism, in which their deaths will alleviate the strain on a healthcare system clogged by senescent bed-hogs.

For me, euthanasia or assisted-dying becomes a complex moral dilemma when the person who wants to die is experiencing unceasing, terminal, and/or unbearable pain in life, and wishes a dignified death that involves a physician’s help. Stripped of this urgency, Kay and Cyril seek to end their lives merely to escape middle-class malaise, and this lack of high stakes, combined with a structure that relies on iteration, undermines the perspicuity its protagonists aim to convey.

What’s more, the structure, at first nifty and whimsical, soon wearies, and the result is an uroboric cycle during which every death is hypothetical, every decision temporary.

Should We Stay or Should We Go promises to explore mortality at a time when growing technological capacity to keep people alive has stretched the “sanctity of life” ethic to the verge of collapse. Although the premise compels, Shriver’s novel is weighed down by the snobbish longueurs of two well-off oldies who, despite their fears of death and dying, find their immortality by coming back to life chapter after chapter.

Complete Article ↪HERE↩!

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Searching for meaning in my mother’s death

By Susan V. Bosak

Death is in the news. There’s the pandemic — all the souls who died alone, a large proportion of them elders in long-term care. Now extreme heat-related deaths are making headlines. There are deaths in contexts as diverse as the Florida condo tower collapse and the unmarked graves on former Canadian residential school sites. Human-made systems and structures are dying, as is too much of the plant and animal life on this planet.

Then my mother died.

Having cared for her 24/7 for 12 years at home, right now the days are too long and the nights are too quiet.

She was diagnosed with dementia in 2007. We moved her in with us and travelled with her on her journey. It was always about quality of life, and death with dignity.

On the day she died, the people who loved her were there, including my four-year-old twin goddaughters, who called her “Nana.” I was talking to their mother, and the girls were playing by the bed. Then I noticed Mom take a deep, pleased sigh and move her mouth slightly. I initially thought she was rousing a bit because of the visitors. But a moment later I noticed she wasn’t breathing. We checked the pulse, and Mom had passed. It was very peaceful, with bright sunlight streaming in the windows. The room could have felt empty, but because the girls were there, it was full of the heartbeat of life.

It was a good, meaningful death. I know I’m lucky.

The last 12 years exhausted us, taught us, changed us. They were full of humanity, interdependence and love. This was happening in parallel to the bigger world becoming increasingly fractured and uncaring.

Coming out of this experience, as a living embodiment of my mom’s legacy, how do I honour what we learned? Perhaps by deeply questioning why we all aren’t able to live a good life, in what some Indigenous peoples call “right relationships,” and respect death in a way that informs life.

In a death-denying culture, what does all of the death around us mean? Our story around death is empty. In a context of an anti-aging fairy tale, it’s obscured by numbers and hidden in shadows. This speaks to our way of life.

Climate scientists talk about three themes moving forward: mitigation, adaptation and suffering.

Ironically, our way of life is not only causing death, but is literally built on death — from millions of years of compressed dead plant matter. When we talk about climate change, we focus on carbon as the problem. The real problem is that we don’t live carbon, we live lives — and our way of life is empty.

The most practical question we face today is how to commit to some notion of human flourishing in the face of existential threat.

Indigenous peoples warned colonists that going against Natural Law, the law of life which respects death, is like going against life, toward your own demise.

Native American Faithkeeper Oren Lyons was involved in the creation of the UN Declaration on the Rights of Indigenous Peoples. As a document that’s fundamentally about life, he has said it can be summed up in four words: “values change for survival.”

In medieval times, memento mori was a Latin phrase urging people to “remember that you must die.” Death is supposed to give life more meaning. It’s a teacher in plain sight, helping us discover what really matters.

If all the death around us is to mean anything, it should be a call to reclaim our humanity, a way of being that works for the continuation of life. Life and death are not inconsequential accidents, but organic parts of a greater whole.

This is the slippery, messy, vital work of our time. Legacy work connects your life story to other life on the planet, and to the even bigger story of lifetimes across generations. Values that are full of life flow from that kind of rich story.

Legacy is not a trivial thing. As a profound connection across time, in the context of lifetimes across generations, it can be either a burden or a gift. It’s where the power is. We don’t take that power, that responsibility, seriously enough.

Before you die, before I die, I have a question: What’s worth living for and dying for, in what we do and how we do it every day, year into year, generation over generation?

Complete Article ↪HERE↩!

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Death Doulas Adapt to Pandemic to Provide End-of-Life Support

COVID-19 prompted virtual visits, more interest in ‘death coaches’

by Robin L. Flanigan

Most Americans say they’d prefer to die at home, and indeed rates of home deaths are on the rise — a trend that may be fueled by the coronavirus pandemic and decreasing nursing home occupancy rates.

But having someone help navigate that end-of-life experience can be essential. Sometimes called a death coach or a death midwife, death doulas act as advocates for the dying, guiding everything from logistical preparations, such as advance care planning and funerals, to incorporating cultural and religious beliefs into final rituals.

“It’s kind of like being an event planner, but for death,” says Virginia Chang, a certified end-of-life doula in New York City.

COVID-19 has forced death doulas to adapt to pandemic restrictions and to new client needs. Those in private practice have had to offer more support over the phone and via Zoom, Chang says. At the same time, given a shortage of home care services, doulas have found themselves providing increased emotional support to caregivers, who may feel isolated or overburdened.

Virtual visits were an adjustment for Chang, who provides services through her business, Till the Last. “I do miss the intimate connection established between myself and the dying person through quiet conversation, presence and touch,” she says. “However, I have always said that empowering the caregivers to better care for their dying loved one meets my goal of better care for the dying person. So, I’m still doing my job.”

Chang has also noticed that patients and family members are getting in touch earlier than usual. Instead of being summoned weeks, or even days, before death, she is being contacted months, and sometimes years, before an anticipated death.

“They want to be better prepared,” she says. “By being better prepared, they’re better able to face death when it comes.”

Death doulas a ‘missing piece’ in care

Home has surpassed the hospital as the most common place of death in the United States for the first time since the early 20th century, according to a New England Journal of Medicine study published in 2019 (months before COVID-19 hit the U.S., which means that the number of home deaths is likely higher now).

Studies have shown that approximately 80 percent of Americans would prefer to die at home if possible, according to the Stanford School of Medicine. That figure may be higher now, after the pandemic focused people’s attention on death and dying, but COVID-19 has certainly amplified interest in the role of death doulas, says Henry Fersko-Weiss, 73, a licensed clinical social worker who, in 2003, created the first formal end-of-life doula program in the U.S., at a New York City hospice, and cofounded the International End of Life Doula Association.

“The recognition that death can be done differently is increasing because there’s been so much talk about death and dying,” he observes.

Though the work that death doulas do has probably gone on for thousands of years and been called different things, Fersko-Weiss says, the death doula movement gained steam two decades ago, offering meaningful services to those who felt limited by a traditional medical system.

“End of life needs more than crisis intervention,” he says. “This is a missing piece during a very demanding time in people’s lives.”

Fersko-Weiss cautions that people who are interested in working with a doula should know that no industry standards currently exist and that a certification by one organization doesn’t hold the same value as a certification by another.

Chang, for example, learned about end-of-life doulas after attending a talk that Fersko-Weiss gave. She has since been trained by the International End of Life Doula Association, the University of Vermont End-of-Life Doula Professional Certificate Program and the Visiting Nurse Service of New York.

Ask plenty of questions

Doulas support the dying, but they also provide services to those left behind.

Arlene Stepputat, 67, volunteers as a project manager for the nonprofit National Hospice and Palliative Care Organization’s End-of-Life Doula Advisory Council. The council’s Doula Grief Project, which offers free and confidential grief support services to those dealing with loss, grew out of the COVID-19 restrictions and the fact that most doulas couldn’t work in person with clients and families.

Experienced end-of-life doulas, trained in compassionate listening, provide one-hour telephone or videoconferencing sessions over four weeks as normal support systems continue to be taxed.

People who are considering the services of a death doula should ask plenty of questions, advises Stepputat, owner of Dying in Grace. “Interview that person like you would any other person you’d be making a contract with,” she says.

The National End-of-Life Doula Alliance offers an online state-by-state directory of doulas.

Some questions to ask a death doula are:

  • What is their experience?
  • What do they charge?
  • Where were they trained?
  • Why do they do this work?

Stepputat, who lives in Santa Barbara, California, was drawn to this occupation because of multiple losses: Four days before her 12th birthday, her father died in an accident; when Stepputat was 19, her girlfriend was murdered; and several street youths she worked with as a young adult died from suicide and other causes.

“Choose wisely because you are going to use this person in one of the most challenging times of your life,” Stepputat says. “It can also be one of the most sacred and beautiful times of your life. Creating a peaceful transition for someone you love is a gift.”

And the benefits of a doula-patient relationship go both ways, according to Terry Bonebrake, 58, of Grand Rapids, Michigan, a death doula who says she reaps rewards from her work.

“Anytime you do service work, your focus is on the other person, and yet you learn things you might not ever have known otherwise,” she notes. “What’s probably affected me the most is seeing how much every moment counts. This 60 minutes and the next 60 minutes will never be the same again.”

What do death doulas do?

Doulas “inform, support and guide, rather than advise or do,” explains Merilynne Rush, who offers end-of-life doula training, mentoring and certification through her consultancy, The Dying Year. Rush says end-of-life doulas can:

  • Help form a circle of support and find tasks for those who want to help.
  • Conduct a life review: Record stories, make a video or write letters to loved ones for future occasions.
  • Provide hands-on nonmedical comfort, such as guided imagery, breathing and relaxation techniques, hand massage and essential oil therapy
  • Sit bedside so family and caregivers can rest.
  • Pray; meditate.
  • Offer active listening.
  • Share information about local resources, like hospice and palliative care.
  • Prepare meals and do light housework.
  • Discuss wishes for end-of-life care (advance care planning).
  • Help arrange for (or keep) vigil during active dying.
  • Share information about home funerals, green burials and body care after death.
  • Offer grief support and ongoing visits after the death.

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