Life after death

Americans are embracing new ways to leave their remains

Green burials can save consumers money, and have nurtured a market for biodegradable urns and coffins.


What do you want to happen to your remains after you die?

For the past century, most Americans have accepted a limited set of options without question. And discussions of death and funeral plans have been taboo.

That is changing. As a scholar of funeral and cemetery law at Wake Forest University, I’ve discovered that Americans are becoming more willing to have a conversation about their own mortality and what comes next and embrace new funeral and burial practices.

Baby boomers are insisting upon more control over their funeral and disposition so that their choices after death match their values in life. And businesses are following suit, offering new ways to memorialize and dispose of the dead.

While some options such as Tibetan sky burial — leaving human remains to be picked clean by vultures — and “Viking” burial via flaming boat — familiar to “Game of Thrones” fans — remain off limits in the U.S., laws are changing to allow a growing variety of practices.

‘American Way of Death’

In 1963, English journalist and activist Jessica Mitford published “The American Way of Death,” in which she described the leading method of disposing of human remains in the United States, still in use today.

She wrote that human remains are temporarily preserved by replacing blood with a formaldehyde-based embalming fluid shortly after death, placed in a decorative wood or metal casket, displayed to family and friends at the funeral home and buried within a concrete or steel vault in a grave, perpetually dedicated and marked with a tombstone.

Mitford called this “absolutely weird” and argued that it had been invented by the American funeral industry, which emerged at the turn of the 20th century. As she wrote in The Atlantic:

“Foreigners are astonished to learn that almost all Americans are embalmed and publicly displayed after death. The practice is unheard of outside the United States and Canada.”

Nearly all Americans who died from the 1930s, when embalming became well-established, through the 1990s were disposed of in this manner.

And it’s neither cheap or good for the environment. The median cost of a funeral and burial, including a vault to enclose the casket, was $8,508 in 2014. Including the cost of the burial plot, the fee for opening and closing the grave and the tombstone easily brings the total cost to $11,000 or more.

This method also consumes a great deal of natural resources. Each year, we bury 800,000 gallons of formaldehyde-based embalming fluid, 115 million tons of steel, 2.3 billion tons of concrete and enough wood to build 4.6 million single-family homes.

Mitford’s book influenced generations of Americans, beginning with the baby boomers, to question this type of funeral and burial. As a result, demand for alternatives such as home funerals and green burials have increased significantly. The most common reasons cited are a desire to connect with and honor their loved ones in a more meaningful way, and interest in lower-cost, less environmentally damaging choices.

Rise of cremation

The most radical change to how Americans handle their remains has been the rising popularity of cremation by fire. Cremation is less expensive than burial and, although it consumes fossil fuels, is widely perceived to be better for the environment than burial in a casket and vault.

Although cremation became legal in a handful of states in the 1870s and 1880s, its usage in the U.S. remained in single digits for another century. After steadily rising since the 1980s, cremation was the disposition method of choice for nearly half of all deaths in the U.S. in 2015. Cremation is most popular in urban areas, where the cost of burial can be quite high, in states with a lot of people born in other ones and among those who do not identify with a particular religious faith.

Residents of western states like Nevada, Washington and Oregon opt for cremation the most, with rates as high as 76 percent. Mississippi, Alabama and Kentucky have the lowest rates, at less than a quarter of all burials. The National Funeral Directors Association projects that by 2030 the nationwide cremation rate will reach 71 percent.

Cremation’s dramatic rise is part of a huge shift in American funerary practices away from burial and the ritual of embalming the dead, which is not required by law in any state but which most funeral homes require in order to have a visitation. In 2017, a survey of the personal preferences of Americans aged 40 and over found that more than half preferred cremation. Only 14 percent of those respondents said they would like to have a full funeral service with viewing and visitation prior to cremation, down from 27 percent as recently as 2015.

Part of the reason for that shift is cost. In 2014, the median cost of a funeral with viewing and cremation was $6,078. In contrast, a “direct cremation,” which does not include embalming or a viewing, can typically be purchased for $700 to $1,200.

Cremated remains can be buried in a cemetery or stored in an urn on the mantle, but businesses also offer a bewildering range of options for incorporating ashes into objects like glass paperweights, jewelry and even vinyl records.

And while 40 percent of respondents to the 2017 survey associate a cremation with a memorial service, Americans are increasingly holding those services at religious institutions and nontraditional locations like parks, museums and even at home.

Going green

Another trend is finding greener alternatives to both the traditional burial and cremation.

The 2017 survey found that 54 percent of respondents were interested in green options. Compare this with a 2007 survey of those aged 50 or higher by AARP which found that only 21 percent were interested in a more environmentally friendly burial.

One example of this is a new method of disposing of human remains called alkaline hydrolysis, which involves using water and a salt-based solution to dissolve human remains. Often referred as “water cremation,” it’s preferred by many as a greener alternative to cremation by fire, which consumes fossil fuels. Most funeral homes that offer both methods of cremation charge the same price.

The alkaline hydrolysis process results in a sterile liquid and bone fragments that are reduced to “ash” and returned to the family. Although most Americans are unfamiliar with the process, funeral directors that have adopted it generally report that families prefer it to cremation by fire. California recently became the 15th state to legalize it.

Going home

A rising number of families are also interested in so-called “home funerals,” in which the remains are cleaned and prepared for disposition at home by the family, religious community or friends. Home funerals are followed by cremation, or burial in a family cemetery, a traditional cemetery or a green cemetery.

Assisted by funeral directors or educated by home funeral guides, families that choose home funerals are returning to a set of practices that predate the modern funeral industry.

Proponents say that caring for remains at home is a better way of honoring the relationship between the living and the dead. Home funerals are also seen as more environmentally friendly since remains are temporarily preserved through the use of dry ice rather than formaldehyde-based embalming fluid.

The Green Burial Council says rejecting embalming is one way to go green. Another is to choose to have remains interred or cremated in a fabric shroud or biodegradable casket rather than a casket made from nonsustainable hardwoods or metal. The council promotes standards for green funeral products and certifies green funeral homes and burial grounds. More than 300 providers are currently certified in 41 states and six Canadian provinces.

For example, Sleepy Hollow Cemetery, the historic New York cemetery made famous by Washington Irving, is a certified “hybrid” cemetery because it has reserved a portion of its grounds for green burials: no embalming, no vaults and no caskets unless they are biodegradable — the body often goes straight into the ground with just a simple wrapping.

Clearly Americans are pushing the “traditional” boundaries of how to memorialize their loved ones and dispose of their remains. While I wouldn’t hold out hope that Americans will be able to choose Viking- or Tibetan-style burials anytime soon, you never know.

What is the value of the outdoors for someone living with dementia?

Delve into the world of neurodegenerative diseases, as Active Minds highlights the importance of valuing the outdoors for those living with dementia.

Spending time in the outdoors holds many benefits, from achieving the necessary dose of Vitamin D to exploring our senses and socialising, and this is no different for someone living with dementia.

Whilst extra care may be necessary, there is true value to experiencing the outdoors when living with dementia. Here we will explore just some of the many benefits and activities which would be suitable.

Sensory exploration

As we age it’s common for our senses to decline and it’s therefore important to explore different ways of engaging them to stay connected. When living with dementia, our connection to the world may feel even more distant, as communication difficulties arise, it is therefore vital that other dementia activities are explored. The outdoors provides an excellent multi-sensory platform and can be brilliant way to explore the senses.

Encouraging your loved one to take part in activities such as gardening or bird watching can be great for exploring the senses. The sounds of wildlife, partnered with the scents and sights of the flowers along with the feel of the plants can be excellent for multi-sensory exploration and evoking positivity.

Let’s talk about reminiscence activities

When living with dementia memories and experiences can sometimes become confused or forgotten, which can become highly frustrating. A variety of reminiscence activities have been explored which have been shown to be able to trigger memories in those living with dementia. As our memories are often linked to a specific location or place, exploring these places could be excellent for sparking memories.

Why not visit somewhere familiar to your loved one could help to draw out memories of the past, and in turn encourage conversation and improve mood.

Time to get more social

A common occurrence as we age is the increase in loneliness, and this has been shown to be highly prevalent in those living with dementia. As communication difficulties make it more difficult to hold conversations, other activities should be explored to achieve a level of socialisation.

An excellent way to encourage socialisation and conversations outdoors would be to take part in activities such as group gardening, exercising together, or simply going on walk and identifying plants or animals in a group.

Physical well-being

A hugely important part of our health involves staying physically active, and this is especially important as we age in order to help maintain abilities. Although mobility may provide some restrictions, there are still plenty of outdoor activities which would be suitable.

As someone moves along their dementia journey, mood changes and depression can become more common and as exercise has been linked to improving mood, this is a fantastic way to help relieve stresses and anxieties. Why not encourage your loved one to join you on a gentle walk which gives the opportunity to get exercise along with spending time outdoors and improving mood.

With such a wide variety of benefits of experiencing the outdoors when living with dementia, it is important that these are explored in order to improve everyday mental and physical well being.

Complete Article HERE!

Just In Time For Summer…

Pink Coffin Pool Float With Lid

Have you ever thought to yourself, “Man, the beach is awesome, but what if it had more death?” If yes, then oh boy, we have a treat for you. This pink coffin pool float (complete with lid) was created by Canadian designers Andrew Greenbaum and Ian Felton who launched a Pom Pom Floats brand to make their dream come true. It perfectly encapsulates most people’s two biggest fears of being buried alive and drowning. So much fun, right?

Welcome to the Departure Lounge.

Destination: death

Ricky Gervais with Penelope Wilton in the Netflix series After Life.


Images of sandy beaches, sun-kissed swimming pools and azure blue skies gleam from the window and walls of what appears to be a new travel agent opening in a London shopping centre. But browsers may be surprised by the destination, for it is a journey every one of us will one day take: death.

Look more closely at the posters and it becomes clear that the words are all about “passing away” (half of British adults prefer to avoid the word “death”, apparently). The Departure Lounge, in Lewisham, south London, is the brainchild of the Academy of Medical Sciences, whose mission is to promote biomedical and health research. Death, it turns out, is one of the most under-researched areas in healthcare, accounting for less than half of 1% of money spent.

The idea of the Departure Lounge, explains the academy’s president Professor Sir Robert Lechler, is to enable visitors to ask any questions they might have about the dying process, and also to collect ideas and experiences that could inform future research. “The best time to have conversations about death probably isn’t when you’re confronting it, but well before,” he said. Which is why a shopping centre was deemed an appropriate location – the hope is that the Departure Lounge will attract people who might not be regular visitors to science museums.

Death has been a zeitgeist subject for some years now – witness the Death Café phenomenon, the growth of conferences and books on dying and TV series like the recent Ricky Gervais Netflix comedy After Life. But, says Lechler, the conversation is becoming more urgent. Put simply, there’s more of it about. “Between now and 2040 we’ll see an increase of 25% in the number of deaths per year,” he said. And it’s more than numbers: the run-up to dying is different. “We’re living longer, and the context of death is changing. Longer life means we accumulate more long-term conditions, and people tend to be frail for longer,” he said. “The risk is that people are going to die badly, as opposed to dying well.”

Dr Katherine Sleeman, a palliative care consultant at the Cicely Saunders Institute at King’s College London and a member of the advisory group behind the Departure Lounge, says patients often want to talk about death. “People call it the last taboo, but that’s not my experience. Healthcare professionals can be fearful about raising the subject, but I find patients are often relieved when it’s mentioned. They know they’re dying, and they want to talk about it.”

Also much misunderstood, she says, is that palliative care, far from spelling the end, can mean much better outcomes. “Research shows that when provided early, palliative care is associated with fewer hospital admissions, better pain relief and lower financial costs to the NHS,” she said. “I always say that my aim isn’t to help you live longer, it’s to help you live better.”

On hand will be guides including Yvonne Oakes, a former palliative care nurse who now works as a “soul midwife” or end-of-life doula, supporting patients and their families. In her experience, many people have had negative experiences of death with relatives, and assume that when their time comes isolation, pain and discomfort will be inevitable. That, she says, simply isn’t true. “There is definitely such a thing as a good death. It comes mostly, I believe, from accepting death rather than struggling against it.” And The Departure Lounge, she hopes, will enable people to start to think about acceptance of death, “in a non-threatening, and unforced, way.”

Research into dying, says Sleeman, really matters and can make a real difference. “Many people, and that includes doctors and academics, say: what’s the point of research if it’s not going to prolong life? But that isn’t the point. Quality is crucial: research is quite clear that most people would choose quality of life over length of life.”

The Departure Lounge is supported by the Health Foundation and Wellcome Trust; more information at

Top tips for a good death

Remember this is your death: it’s OK to think about what you really want and don’t want, and be clear about it.

Don’t be afraid to ask for help, and to accept help if it’s offered and you want it. You don’t have to struggle on alone.

Make amends for past hurts and disappointments. Some people write letters – you don’t have to post them.

Consider making a death plan, which is the life-end equivalent of a birth plan. Where would you like to die? Who do you want with you – and who do you not want there? Would you like music to be playing? Do you want to avoid attempts to resuscitate you?

Be aware that death involves loss, so there is inevitably going to be emotional pain, both for you and for those you love. But that doesn’t mean you can’t look for the joys in life, even as your health deteriorates. Life can have meaning and enjoyment right up to the end.

Yvonne Oakes

Complete Article HERE!

A final comfort for dying children…

‘Palliative transport’ to send them home

Anne Brescia sits in the room of her only child, Anthony Gabriel Brescia-Connell, who died of cancer in 2011. The hospital sent him home so he could die there with his family.

By Melissa Bailey

Anne Brescia sat beside her only child, Anthony, as he lay unconscious in a hospital bed at age 16. Just a few months before, he was competing in a swim meet; now cancer was destroying his brain. Brescia couldn’t save her son. But she was determined to bring him home.

Anthony Gabriel Brescia-Connell was not conscious for his voyage from Boston Children’s Hospital to his home in Medford, Mass., where he died on March 3, 2011, surrounded by his family and beloved stuffed animals. He may not have heard the parting blessings before a doctor turned off his portable ventilator and let him die naturally.

But having the choice to take Anthony home, away from the beeping hospital monitors, “meant the world to me,” his mother said.

Anthony’s journey was made possible through swift and unconventional efforts by the hospital staff, including a critical care transport team accustomed to rushing kids to the hospital to save their lives, not taking them home to die.

The experience galvanized Harriett Nelson, a nurse on that team who helped arrange the trip. It inspired her to conduct pioneering research on and advocate for “pediatric palliative transport” — a rare but growing practice that aims to give families choice, control and comfort at the end of life.

Palliative transport lets families move critically ill children from the hospital intensive care unit to their home or hospice, with the expectation they will die within minutes to days after removing life support.

It means “having parents go through the hardest thing they’ll ever know — in the way they want to do it,” Nelson said. Boston Children’s has sent 19 children to home or hospice through palliative transport since 2007, she said.

These final journeys — also offered by the Mayo Clinic, Children’s Hospital of Philadelphia and Kentucky Children’s Hospital — can involve elaborate planning, delicate transfers and even long helicopter rides. In some cases, families took a child far from home for a last-ditch effort to save their lives.

At the Mayo Clinic, palliative transport has helped culturally diverse families carry out end-of-life wishes for their dying children. In one case, a newborn girl rode 400 miles by ambulance to return to her Amish community, where she was extubated and died in her parents’ arms, in the company of her 11 siblings. In another, an 8-month-old Native American girl traveled 600 miles by air and ground ambulance to her rural tribal reservation, where she could participate in end-of-life rituals that could not be done in the hospital.

These trips, which can cost thousands of dollars, are typically offered free to families, paid for by hospitals or charities. Most children are taken home, where they transition to receiving care from hospice staff. Some go instead to hospice facilities.

A collection of photos of Anthony Gabriel Brescia-Connell, who was 16 when he was transported from Boston Children’s Hospital to his home in Medford, Mass., where he died on March 3, 2011, surrounded by his family and beloved stuffed animals.

Megan Thorvilson, a pediatrician and palliative care specialist at Mayo, said palliative transport aims to address a gap between families’ preference and reality.

Most parents of terminally ill children would prefer that their child die at home, but most of these children die in the hospital, most commonly in the intensive care unit. Most pediatric ICU deaths happen in a controlled way, following the removal of life support, she said. That means there may be time to move the child to an alternative location to honor a family’s wishes.

Transporting children on life support is risky. At a palliative care conference, a nurse from Children’s Hospital of Philadelphia described the difficulties staff faced in trying to fly a 10-year-old girl home to Michigan. After she was rolled on her side several times to be transferred between vehicles, the child died before the plane could take off.

And dying at home is not what every family wants.

“We do sometimes overly romanticize the death at home,” Thorvilson acknowledged. Some parents would much rather have a child die in the hospital, with familiar nurses at the bedside for medical and emotional support. Some would rather keep this traumatic experience away from where they live.

Brescia, however, said she couldn’t bear to return home without her son.

A biologist who used to run an electron microscopy lab, Brescia wasn’t sure whether she and her husband, Brian Connell, would ever have children. Fertility treatments didn’t work. But on June 23, 1994, seven days before Brescia turned 44, she gave birth to a baby boy.

“Anthony is the love of my life,” said Brescia, who is now 68. “The OB/GYN put him on my chest and I really thought that my heart was going to burst.”

The mother-son bond was especially close: Brescia home-schooled her son for most of his life. Anthony grew to be 6 feet tall, full of curiosity. He loved identifying mushrooms, studied Arabic and oceanography, and aspired to go to MIT. He was an avid swimmer, competing on a team in Belmont, Mass.

One day in late 2010, while racing the backstroke, he became disoriented in the pool and was disqualified.

A neurologist prescribed rest. But over the next two weeks, Anthony grew only more tired and began to lose his balance. On Dec. 20, he was taken to Boston Children’s Hospital and diagnosed with a brain tumor.

The disease “came out of nowhere,” Brescia recalled. “He went from looking incredibly healthy and swimming like a healthy kid” to living at the hospital. At his bedside, she told him she’d bring him home to celebrate Christmas and eat stuffed shells.

His condition deteriorated quickly. The tumor could not be surgically removed. Anthony pushed through radiation and chemotherapy with the hope of going home, but the treatments failed. By late February 2011, the tumor began pressing on his brain stem, and fluid was building up in his brain.

Anthony was unconscious, relying on a ventilator to breathe. Brescia connected with the hospital’s palliative care team.

“I want to bring him home tomorrow,” Brescia told staff.

“I was scared to death he was going to have another incident,” she recalled. “I didn’t want them to do any more invasive procedures to reduce the pressure on his brain.”

Staff from the ICU, palliative care and transport teams scrambled to honor her request. The critical care transport team arranged for the use of its ambulance, a mobile ICU the size of a small bus.

The night before the trip, Brescia said goodbye in the privacy of Anthony’s hospital room.

“I don’t want to lose you,” she told him, holding his hands. “I’m going to let go. I want you to go where you need to be.”

On March 3, 2011, Brescia and her husband boarded the bus along with Anthony, a chaplain, two doctors, Nelson and a nurse from the ICU. They rode 10 miles to the family’s home, where Anthony was laid on a hospital bed in his living room, surrounded by his stuffed animals, on his favorite flannel sheets.

A pastor held a service for Anthony, and close family gathered to say goodbye. Then Brescia signaled for a doctor to disconnect the ventilator.

Anthony seemed to be at peace, Brescia said. After he died, she climbed into the bed with her son and held onto him for a while.

The death was still traumatic. But “it was really a gift to bring him home,” she said. “It was a significant act of compassion and kindness and love on the part of the Children’s staff.”

After Brescia’s experience, Nelson was inspired to offer the choice to more families.

First, she interviewed Brescia and other parents about whether palliative transport had a positive effect. All nine parents said it had. One family described holding a celebration when they brought their newborn baby home, even though he was about to die. They took family photos and used the nursery they had set up, establishing a brief sense of normalcy for four days before he died.

In her 14 years on Boston Children’s critical transport team, Nelson has found that parents benefit from palliative transport for various reasons: At home, they’re away from the noise of the hospital. They have control over who can visit. They feel more comfortable. And they don’t feel rushed after their child dies.

Nelson created a protocol that allows the hospital to offer palliative transport in a more routine way. Now, when children come to any of the hospital’s four ICUs, Nelson said, “we have the power to say, ‘You have a choice when it comes to the end of life.’ ”

The practice appears to be spreading.

After Lindsay Ragsdale, the physician who is director of the palliative care team at Kentucky Children’s Hospital in Lexington, presented her protocol for palliative transport at a conference last year, staff from 20 hospitals asked her to share her checklist, she said.

Mayo’s Thorvilson, who has worked closely on a half-dozen palliative transports, said it’s possible these last-minute trips from ICU to home could be avoided by earlier referrals to hospice, which might get kids home sooner. But when children with complex illnesses get sick, she said, “sometimes it’s hard to know whether this is just another bump in the road, or whether this is the natural end of the child’s life.”

“There’s something really unique about a child dying,” she said. “Everyone’s heart breaks, and we want to be able to do all that we can to be able to support the family in the midst of the tragedy.”

Eight years after Anthony’s death, his bedroom remains untouched, his socks still folded in his top drawer, swimming trophies on the cabinet, slippers under his chair. Pictures of him adorn every room in the house — on the fridge, the kitchen table, the living room stereo.

Looking through photos one recent morning of her son fishing and blowing out birthday candles, Brescia struggled to hold back tears.

“I couldn’t cure him,” she said. “I failed to protect him from a tumor — that’s how you feel. They did all they could. It wasn’t enough. Bringing him home was the best I could do.”

Complete Article HERE!

For people with dementia, a fight for the right to die

The Alzheimer Society of Canada is reconsidering its position on advanced requests for assisted death, amidst a difficult debate about the rights of those with dementia


Ron Posno was diagnosed with mild cognitive impairment—a precursor to dementia—in 2016, and soon after, the London, Ont., resident re-wrote his will. He already had a Do Not Resuscitate order in place, and to this he added instructions for the niece who was his substitute decision maker that at a specific point in the progress of his illness, she was to seek medical assistance in dying on his behalf.

The eight conditions that Posno identified as signalling the proper time for his death are like a photographic negative that also reveals what he considers a life worth living. When I am unable to recognize and respond to family and friends; when I frequently experience hallucinations, paranoia or acute depression; when I become routinely incontinent; when I am unable to eat, clean or dress myself without assistance: that is when I want it to be over.

But then Posno’s niece, a lawyer in Toronto, informed him that an advance request like this for medical assistance in dying (MAID) was against the law and she would have no ability to act on it once he could no longer consent.

Posno had assumed that this request was basically an extension of his DNR: a statement of his desires for medical treatment in a given set of circumstances. He found it incomprehensible that he could legally state that he did not want CPR and the instruction would be followed if he were unconscious with a DNR in place, but in the face of an illness that would eventually render him unable to provide informed consent, he couldn’t request MAID on behalf of a carefully delineated future version of himself.

“These eight conditions are like signposts on the road to decline. I am declining. My mind, literally, is being destroyed on a daily basis. There’s nothing I can do about it, there’s nothing anybody can do about it… It’s just disappearing,” the 79-year-old says. “I do not want to live like that. I don’t want to do it, I don’t want to inflict it upon the people who care for me.”

MAID is “likely the most compelling piece of health legislation” Canada has crafted in decades, he says, “And yet it fails, and it fails primarily because it discriminates against people with dementia.” Posno has spent the last year waging a vocal campaign of advocacy and agitation against what he sees as a galling infringement on the rights of people with dementia.

Under Canadian law, MAID is available to adults with a “grievous and irremediable medical condition” whose natural death is “reasonably foreseeable,” and medical professionals must obtain informed consent from the patient just before administering the life-ending medications. In the late stages of dementia, people no longer have the capacity to provide that consent, and there is no provision in the legislation to work around that.

Of the three special circumstances that were excluded from Canada’s assisted dying law in 2016 and set aside for further study—advance requests, mature minors, and cases where the sole underlying condition is mental illness—advance requests are, by far, the circumstance that has generated the greatest interest, demand for change and fraught contemplation.

And rising rates of dementia in an aging Canadian population, the very nature of a condition that inexorably means an eventual loss of competency, and many people’s knowledge, fear and deep antipathy toward the idea of lingering in the later stages of the disease has centred much of the debate about advance requests in the world of dementia.

To Posno, the absence of advance requests in Canada—they are available in some form in just four countries worldwide, and even then employed with vanishing rarity in cases of dementia—is an appalling omission that deprives him of the rights afforded other Canadians under the Carter decision in which the Supreme Court of Canada struck down the prohibition against assisted death.

“MAID was designed deliberately to exclude people with dementia because of this general naive and very biased notion that people with dementia are vulnerable,” he says. The refrain he hears again and again to explain the opposition to advance requests is, “We must protect the vulnerable.” Posno’s voice is tipped with acid when he responds: “I’m not vulnerable.”

The Alzheimer Society of Canada has been one of the prime targets of his advocacy campaign over the last year, due to a formal position statement in which the organization opposed advance requests. “The Alzheimer Society of Canada believes that because we cannot predict future suffering, providing advance consent for MAID should not be possible for people with dementia,” the statement said, in part. “The Alzheimer Society believes that people with dementia need to be safeguarded as they will be extremely vulnerable at the end of their life.”

That position statement was released right before assisted death was legalized in Canada and in place until February 2019, when the ASC pulled it for review. An updated version will be released mid-summer. And in fact, the re-examination within the organization of its approach to MAID and advance requests began well before Posno publicly raised his concerns.

“When I arrived at the Alzheimer Society a few years ago, it’s the first question I asked: ‘How did we come up with this and why did we end up there?’” says Pauline Tardif, who took over as CEO in the spring of 2017. “It can be perceived in a negative way as non-supportive of people who may want to self-advocate or have authority over their affairs right to the end of life. For the same reason Ron is questioning it…I had the same question.”

The ASC arrived at its original position through consultation with experts in health care, ethics and law, as well as people living with dementia. The institutional soul-searching that went into that process—and the revision currently underway—reflects both the profoundly difficult issues surrounding advance requests broadly, as well as the difficult fit between MAID and the society’s core missions.

The stigma of dementia is one of the most common problems her organization hears about, Tardif says, and people with dementia often say they feel like the progress of their illness gets artificially accelerated when people assume they can no longer drive, or talk about them instead of to them.

She worries that people with dementia may internalize that stigma, too, and if advance requests were available, some may opt for MAID out of a warped sense of what their future life will be like, or fear of being a burden. “The fact is that many people with dementia lead very meaningful, active lives for quite some time after diagnosis,” she says. “The fear, or the unknown, or the projection or the assumption that people don’t have quality of life or have meaningful life—however an individual diagnoses that—makes it challenging for some.”

Another of the major concerns of the ASC mirrors one heard in the palliative care community: their mission is advocating for more supports and better care, so they worry MAID could inadvertently become a sort of societal escape hatch that undermines the quest for more resources for overwhelmed caregivers. “So instead of society having the reflex of supporting that family through their dementia journey, that could be an easy out,” Tardif says.

One of the most existential concerns around advance requests is the unknowable quality of the inner life and desires of people in late-stage dementia. Tardif comes to this with very personal and recent experience: in January, her mother died after living with dementia for a number of years. “Would she have wanted to live in this way? If I had asked her 30 years ago, she would have said ‘No way.’ I know this,” Tardif says. “But would I have been able to make the decision to say, ‘Oh no, this is the time where she would have said no’? Personally, I could not have done that, because I wouldn’t have known if that was last year or next month or even right to end of life.”

More than anything, it was the newness of Canada’s MAID regime and the unknown territory into which the country was venturing that caused the ASC to adopt a policy that may have appeared “overly cautious or even protective,” Tardif acknowledges. “It was well-informed, but at the time, the law was just passing, and I would say that our instinct, if I can call it that, was to ensure that we took the right time to look through the complexities of the file,” she says.

The new position the society will adopt this summer will not advocate for or against a particular policy, but rather focus on providing information and support for people with dementia, regardless of their choices.

The Liberal government has said it has no plans to re-jig the law to include advance requests, with then-Justice Minister Jody Wilson-Raybould saying in November that the government is confident its legislation “finds the right balance in terms of being able to access medical assistance in dying, protecting the autonomy of individuals to make the appropriate decisions for themselves, as well as protecting vulnerable individuals.”

So for now, the debate is purely a theoretical one, but given the profound issues at play, it is unlikely to fade away. “It may be impossible to square, right?” Tardif says. “We may need to accept that it is a very complex onion that we need to peel back slowly.”

Jim Mann, of Surrey, B.C., comes to the issue with similar experience to Posno, but he has arrived at a very different conclusion. Mann has observed firsthand and twice over the stigma attached to dementia: His mother was in the late stages of dementia in 2007 when he was diagnosed with Alzheimer’s, at the age of 58. He’s seen how people will ask a caregiver how a person with dementia is doing while the person is standing right there.

Like Tardif, he worries that people can internalize that stigma and “panic” about their own futures, which is why he is not in favour of advance requests. “Some people—I think personally it’s probably a fair number of people—are just afraid of getting to the end of the dementia journey, the idea that you lose your independence, the idea that you might lose your communication skills, the names of your family and so on, just that idea is incomprehensible,” he says. “Because of that projection into an unhappy moment or an unhappy situation, then their current vision is one of ‘I won’t go there.’”

Mann has come to think about dementia in terms of the creativity required to live with and work around it. When he realized that loose change was tripping him up at a cash register, for example, he switched to using only bills. He applies that same sense of accommodation to thinking about quality of life and sources of happiness in the latter stages of dementia.

As his mother’s illness progressed, they would often sit in the lounge of her long-term care facility and watch the show through the south-facing windows. Planes took off and landed at a nearby airport, and while his mom called them “the bus,” Mann knew exactly what she meant and it was a shared experience they delighted in. The landscape bloomed into life in the spring and took on a burnished palette in the fall, and they soaked it all in together. “That was joy,” he says. “I like to think you can still bend over and smell a rose; you might not know what it is, but the smell is lovely. Why miss out on that? I just wouldn’t want to.”

But while Mann bases his opposition to advance requests on a clear image he has of the later stages of his own illness—and the sort of adjusted-but-real happiness he believes can be found there—Posno’s equally vivid notion of what lies ahead is precisely why he wants the power to decide on his ending.

“I can talk to you, I can sing songs. You can keep me busy all day colouring a colouring book, I can go to bed every night with a teddy bear. That’s what they do!” he says, his voice leaping an octave in outraged horror. “That’s what’s considered a normal, happy life for a person in that last terminal [stage].”

To Posno, the argument that he won’t be aware of or distressed by his condition then is irrelevant: the Ron of today can see over that horizon and abhors the idea of his future self living it. And similarly, the notion that someone in late-stage dementia might seem contented and free of obvious suffering, and that a substitute decision-maker or doctor might be reluctant to act on an advance request because of that, misses the point.

“My mind will not have changed; my mind has disappeared. They have no right to say I’m happy and I deserve to live. I am not living at that point, I am existing,” he says. “Your life is in your mind, and when your mind goes, you are not alive.”

The chasm between Mann and Posno’s visions of their future, and the ways in which the Alzheimer Society has struggled with this issue, all point to the same truth that underpins the confounding issue of advance requests: How and when you wish to die is, really, about how you want to live.

Complete Article HERE!

‘A good death’

Nurse pioneers a better way for elders to die

Nurse practitioner Nikki Johnston has been awarded the inaugural Health Minister’s Award for Nursing Trailblazers.

By Steve Evans

Nikki Johnston is passionate about dying.

She’s just won a big prize as Australia’s most innovative nurse. It was a recognition of the way she is changing the way the elderly end their lives.

Her mission as a nurse in Canberra is to help people have what she calls “a good death”.

She says too many people have “bad deaths” where fear and loneliness dominate their last moments.

Her radical idea is to involve people who are in their last months in the planning for those final fearful moments. The dying attend meetings where their own deaths are discussed.

She says a rigorous study of the results of the new system demonstrates clearly that it is a better way, and she’s pressing politicians to adopt it in the rest of Australia and beyond.

She also thinks there is too much emphasis on research to prolong lives at the expense of spending more to ensure that people die in peace at the right age.

Ms Johnston is a “nurse practitioner” who works in palliative care – it’s the most senior type of nurse, qualified to diagnose illnesses and prescribe drugs and treatments.

She has a missionary zeal for involving the patient in (arguably) the most important process affecting them – their end.

In the residential homes where the system is now used, the dying person attends the meetings and hears how their death will be dealt with. Their views are listened to and acted on.

“If we don’t ask the questions and give people the opportunity to talk about the end of life, we risk isolating people in their last months,” she says.

“They feel like no one gets it – no one understands – what’s going on, and that can be frightening.”

Researchers have studied 1700 people in the ACT at the end of their lives, comparing those where the system is in operation and those where it is not.

The study – the first of its kind in the world – involved rigorous measurement of a raft of variables like how soundly people slept in their last months and how much medication they needed.

The researchers devised a “quality of death” index. Ms Johnston says the results show that the new way works.

She argues that there should be a switch from maintaining uncomfortable and painful lives to the quality of death. “People are living longer but their quality of life is reduced so they are not living well enough or dying well enough,” she says.

“We are not valuing the end of life because we are not putting money into it.”

With the new system, people aren’t told bluntly that they are dying.

Ms Johnston says that she might have a conversation with a resident of an aged care home and ask them how they saw their future. In that conversation, the old person might well say that they thought they were dying.

“I ask them where they are at, what’s important, and most people tell me they are dying,” Ms Johnston says.

“If they are leading this conversation, It’s not confronting. They have taken us there.”

“Gently, we normalise death and dying. We help the staff to be able to talk about it. We support the relatives and loved ones through the process.”

She said that the elderly people she deals with generally don’t fear death. “Most people are ready. They are sick and they’ve had enough. They are ready to go.

“To help someone in their last months of life, we need to know them – to sit with them and talk to them. We need to know what’s important. How do we get this right for the person?”

That is what happened, for example, with Chris Dillon, whose death on March 29, 2017 was peaceful, according to her daughter Rose.

Chris Dillon and family dog, “Dublin”.

The aged mother had been in a residential home in Ainslie for just over two years.

According to her daughter, Mrs Dillon said one day that she felt tired and she was close to the end of her life.

Once that was recognised, the palliative care team became involved.

“She was a pragmatic person,” Rose says.

“She wanted to know what it would feel like, would it hurt, how would people know that she was dying. What would they do with her body?

“And then Nikki came along. She sat down really close to Mum and said: ‘I’m Nikki. I’m from palliative care and we need to talk about some things’.”

According to Rose, her mother simply replied: “What? About me dying?”

“So the conversation started naturally,” she says.

“The impact that Nikki had on Mum’s death was massive. It allowed Mum to have a peaceful death.

“She wasn’t frightened.”

The new system involves staff keeping a kind eye on residents

At the Calvary Haydon Retirement Community in Bruce, for example, manager Kim McGovern says she and her staff quietly look at residents every month to see “who might not be there next month”.

Kim McGovern of Calvary Haydon Retirement Community in Canberra.

Once people are identified, they are talked to sensitively.

An “individual care plan” is drawn up with the involvement of the resident.

“It’s their choice. We involve them early on,” Ms McGovern says. “It’s their last journey.”

The involvement of the dying person allows proper preparation, both medically and emotionally.

This means a final crisis, in which the patient is rushed to hospital to die in a chaotic emergency, is less likely.

Ms Johnston is an extraordinary character – bright and vivacious (at least when she’s expounding on the importance of helping people have “a good death”).

She may have dark moods, in that she says she needs to put her “armour” on before she attends some deathbeds.

And she does cry – after all, she’s got to know the person – but, as she puts it, “this isn’t my grief”.

“The grief belongs to the family,” she says.

Complete Article HERE!