Month: June 2019

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Solace after suicide…

My journey to forgiveness

by The Listener

For Katie Anders*, coping with suicide grief means remembering how her husband lived, not how he died.

Every suicide story that hits the headlines stirs the pain for those of us who have been bereaved by such a loss. The headlines are bigger and somehow more shocking when such high-profile names as Anthony Bourdain and Kate Spade join those of our loved ones. But the grief for those left is the same.

I lost the love of my life to suicide. He was middle-aged, very successful in his profession and loved by family and a wonderful group of friends.

Our communities have such a sense of helplessness and hopelessness in the face of suicides. It is in the crisis period leading up to a suicide that there is the chance for effective intervention, and yet there is little effective help.

And, yes, there is a still a stigma around mental health. For us, it meant we had to protect my husband’s reputation for when he returned to work. The professions are not a lot more enlightened than anyone else.

The crash happened one May day. I walked in on him sitting at his desk at work, and was shocked to find him weeping. He said, “I can’t do this any more.”

We visited our GP and at first it seemed like exhaustion; just plain burnout. We had just come back from three weeks’ travelling and he hadn’t slept well; he had returned to a mountain of work. It was a job he loved and in which he had quietly excelled. He was a gentle-natured man who worked in a world of ambitious colleagues and he had forged a different path to the top. He was respected by most, admired by many.

We quickly arranged for his work to be done by others and he took “stress leave”. Within weeks, it was clear the malevolent black dog of depression was stalking him. We did all the right things: exercise and a good diet. He had great support from loved ones. He began using antidepressants and sleeping tablets. We saw an occupational psychologist, who was enormously helpful. Yet still the black dog circled.

Weeks passed. Then one day I found him curled into himself on a chair, his back to me. I tried to engage him, but he wouldn’t look at me. I took his face in my hands, forcing him to meet my eyes. I demanded to know what he was thinking, but in reality I knew.

He had reached a tipping point. We urgently needed more expertise. An acquaintance who was a good psychiatrist agreed to see him immediately (and privately).

I was determinedly optimistic we would get through it. We were a “lucky couple” whose marriage had fulfilled each of us. We laughed a lot and loved a lot. We had lovely children, now grown and forging their own lives. Many saw our marriage as one of the successful ones; we both thought so, too.

His promise to me that he wouldn’t act on his thoughts seemed to be enough to hold him back from the edge – that and the increasingly heavy doses of medication he needed. We began cognitive behavioural therapy (CBT) with another psychologist.

A few weeks later, things seemed to be moving in the right direction until some odd things started to happen. The medication had tipped him into a manic state, so he had to withdraw from all the antidepressants. The psychiatrist felt that a prior serious head injury had probably caused the manic response, so mood-stabilising drugs were required.

Some normalcy began to return to our lives. My husband continued his programme of health and fitness and after a few weeks, he seemed well enough to return to work for short periods. We breathed easier.

But then an emotionally stressful event occurred: he was desperately concerned about someone close who was in strife overseas. His sleep was seriously disrupted and he was very worried. The depression was renewing its grip and as the antidepressants were now contraindicated, we were at a loss for effective solutions.

The psychiatrist hoped that since the relapse was in its early stages, we could work to stop its progression by using mindfulness meditation and more CBT and counselling. He was very low, but again, he reiterated his promise to me.

Three days later, he was dead. The black dog’s work was done.

*The writer’s name has been changed.

Questions and guilt

On the night he died, I sat at his bedside, shattered by the horrific development, the crashing grief threatening to crush us all. I was full of confusing questions and guilt. How could he have done this? How could he have walked past me as I slept and not woken me and sought my help?

Sometime in the wee hours, I decided to write him a final letter. And as I began, some things crystallised. I needed to forgive him before we let him go. I read him my letter aloud, then later repeated the words at his funeral. That night, wracked with the deepest pain, I told him, “The man who did this thing was a man in the grip of a fierce depression. It was the depression that broke the promise, not the man that we love. That’s why, distraught as I am, I have to forgive you, because all that I know and have experienced of you through all the years tells me that you never wanted to hurt us, never wanted to leave us.”

Some months later, I heard someone (also bereaved by suicide) on a radio programme put it very succinctly: her husband hadn’t been leaving her or her children, he was leaving himself.

Years before, I had read Elisabeth Kübler-Ross’ book On Death and Dying and, later, I trained and worked as a volunteer with terminally ill people, and learnt about bereavement support.

It’s accepted now that work around the stages and processes of grief was too rigid. Each grief experience is unique and people don’t necessarily experience all the stages or go through them in any particular order. For example, while others felt anger at my husband, I never have. Even pathetic attempts to somehow manufacture anger failed. How could I be angry at someone so broken?

In the aftermath, I felt the deepest sadness for him, for his loss, for all that he would never get to experience. I felt devastatingly sad for our kids. But for me, the grieving process was delayed by my upbringing. It held messages of “Don’t you feel sorry for yourself” and “Pick yourself up and get on with it”.

It took a long time to let myself feel the full devastation of my own loss. The numbing effects of shock meant that I walked around in a world that felt surreal, that simply couldn’t be true. This wasn’t how our love story was supposed to end. We were supposed to grow old together, travel, have grandchildren.

Tortuous paths

Suicide grief holds so many “If only …” and “What if …” questions. What if I had heard him get out of bed? What if I had handcuffed him to me to keep him safe? What if he had slept through those darkest hours before dawn and woken to sunshine?

The “what ifs” are where the self-torture lies. I felt so guilty that I struggled to want to live. Sometimes I still feel surprised that I didn’t die of the brokenness I felt.

Logic says there is no useful purpose in following these tortuous paths. But some years on, they still come into my mind and I speak to those thoughts as firmly and logically as I can.

I learnt a lot from my counsellor about self-forgiveness. It is more of a journey than a destination. Someone spoke to me about the idea of practising my husband’s presence rather than his absence. It seemed to break down some of the enormity of it all. If I had to completely and immediately accept his absence from my life, you might as well have asked me to swim the Atlantic. But if I could practise his presence, which permeated my life, while slowly adjusting to his loss, then it felt more like paddling in the waves at the water’s edge and not getting completely out of my depth.

Practising his presence is simply being mindful of his hand in the life I continue to live. It’s being able to access his way of thinking an issue through. His presence is in the millions of memories. It’s practising his habits of observing and appreciating the beauty around. He is visible in his imprinting on our kids … aspects of him in their personalities. It’s in watching rugby with my daughter and shouting the way he shouted. It’s in the kids’ love of language and awful puns. It’s in the thousands of photos taken over the years.

We remember how he lived and not how he died, but the truth is that suicide grief is a unique grief. People aren’t comfortable around it. I accept now that even if my life should suddenly become deliriously happy, the loss of such a precious partner through suicide will forever be a hugely black awfulness on its timeline.

Actress Dawn French said that when her father committed suicide, it was like a bomb went off in their family. It’s an apt description. My life is forever changed, my confidence diminished and my happy moments are often tinged with poignancy. At the risk of sounding overly dramatic, I feel my heart carries a permanent scarring.

Few understand the complexity and longevity of suicide pain. It isn’t easy, as one friend put it, to “move forward” as a simple act of will. If my husband had died of a heart attack or cancer, I know that grief might have been easier to move on from.

Yet I take joy in our amazing children, their partners and now a grandchild. I am fortunate in having some close friends. I try not to let the manner of his dying take more than it should. Above all, he wouldn’t want that and he would hate the pain that his suicide caused. Despite it all, I will be forever grateful that my life was greatly enriched by a truly lovely man.

Complete Article ↪HERE↩!

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How to talk to your friends and family about death and dying

It’s a conversation nobody really wants to have because it’s about a subject none of us wants to face…

By Donna Fleming

It’s important, nevertheless, to talk to people close to us about death and dying, so that when the time does come we know what their wishes are and how best to support them.

Also, telling family members what you want when it comes to that end-stage of life can make a difficult time easier for them.

Funeral directors constantly see families grappling with grief and having to make decisions when a special person to us has passed, and say having had “that conversation” can take away some of the pressure.
Dean Maxted, assistant manager at H Morris in Northcote, Auckland, says it not only helps with the logistics of organising a funeral, but also opens the door to getting people talking about matters that are important and have perhaps been left unsaid.

“Talking about personal preferences and what you would like when it comes to your funeral can be a really good conversation starter to all sorts of other big stuff,” says Dean. “It can lead to really valuable discussions that you might not have had otherwise.”

In some cases, it can help people come to terms with facing the inevitable and it can also strengthen bonds or mend fences. It may also be a chance to let go of long-held secrets that can weigh someone down.

And whether you’re having the conversation with someone living with a terminal illness or the subject has been raised because you know it is something that will have to be dealt with one day, it is important to pay attention to what the other person has to say.

“Death and dying is not a rational topic and people don’t always react how you think they will,” says Dean, who has seen people respond to facing death and the loss of someone they care about in just about every way possible during his years in the funeral business.

Then there are the huge range of emotions people can experience when they’re faced with dying. These include fear of what will happen and anger that their lives are being cut short, through to disappointment that they have not achieved what they wanted to. Some people are so worn down by illness and old age that they can’t wait to go. Others are very grateful for the care they’ve had and feel satisfied with their lot.

“No matter how they are feeling, the important thing is that you are talking about what they are going through and that they know they matter enough for someone to listen to them,” says Dean. “Taking that on board is as generous a thing as you can do for anyone.”

Tips on having a conversation about a tough subject

• Be sensitive to the needs of the other person. Raise the subject at an appropriate time and don’t be pushy if they don’t want to talk about it.

• If you find it difficult to handle having the conversation yourself, maybe there is someone else who can do it instead, for example a relative or friend, a minister or pastoral carer, or a counsellor.

• Write down their wishes. This is not only helpful for later on, but also shows that they are being listened to.

• Be respectful and calm.

Complete Article ↪HERE↩!

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More elderly and fewer children…

who will make final decisions in the future?

By Angela Y. Lee

With an aging, childless future, who’s going to take care of us when we get old? Who’s going to make those end-of-life decisions for us when we can no longer decide for ourselves?

A recent global report from Axios, “The Aging Childless Future,” shows that in the U.S., a fertility rate below the “replacement rate,” according to the Centers for Disease Control, occurs at the same time as the rise in global life expectancy. In 2015, the global life expectancy of about 70 years old will rise to 83 years old in 2100, according to U.N. data.

The report states, “Except in Africa, by 2050 about a quarter of the world population will be 60 or older. At about 900 million now, their numbers will rise to about 3.2 billion in 2100. By 2080, those 65 or older will be 29.1 percent of the global population — and 12.7 percent will be 80 or over, Eurostat reports.

A troubling takeaway from the report is that there simply will not be enough workers to support the elderly, In the U.S., there are fewer than four workers per retired person. In seven European countries, there are three and in Japan, there are two workers per retired person.

The implications of this population shift affect public policy, health care, elder care, end of life decisions, the overall economy and every family in America and across the world.

I understand this firsthand. My mother is 96 years old and has Alzheimer’s. Two months ago she suffered a massive stroke and was in a coma for two weeks. Her heart rate slowed down to the 50s and 60s; her blood pressure dropped to 70/44. Her body was not ingesting the food she was fed through a feeding tube.

My siblings and I decided to remove the tube to make her feel more comfortable. We were preparing for her departure; and the priest (who was a former student of hers) came to administer the Annointing of the Sick. And one of us was always there with her.

Gradually her heartbeat got stronger, her blood pressure started to climb and she was able to breathe without the support of the ventilator.

The doctors’ prognosis was bleak — our mother would inevitably get pneumonia, or some infection. We had discussed and all agreed that we would not want to prolong her suffering. So no resuscitation, no reattaching to the ventilator and no antibiotics.

What about the feeding tube? One option was not to reintroduce nutrients through the feeding tube and essentially let her waste away. The other option was to reintroduce nutrients and wait for some infection to happen (which according to the doctors was just a matter of time). Starving mother to death might be a more humane decision, but it was immediately rejected by my sister who is a Buddhist. She thought our mother wanted to live and we should honor her wish and give her a chance.

Mother did not have a living will. We were all trying to make a decision on her behalf — based on what we thought she wanted, based on what we thought was best and on what we personally would like to happen if we were in her situation.

Our mother had on occasions before the stroke complained that she was bored and life was not worth living. But that didn’t necessarily mean that she wanted to die. Her complaint could be her way of telling us that she wanted us to visit more often.

Families all across the globe are faced with similar scenarios. In a future where perhaps children are not there to facilitate these decisions, how will these life and death decisions be decided and by whom? Leaving these decisions to chance, or to administrators, health-care workers and other strangers is a frightening possibility.

Everyone should have a living will — in order to depart this world with dignity, free from prolonged pain and suffering. However, an end-of-life decision made as young and healthy people may not be the same end-of-life decision when older, weaker and perhaps unable to communicate.

Research in affect forecasting — or  the ability to accurately predict future emotions– has consistently shown that people are reliably inaccurate in predicting how they would feel in different situations

In one study, younger participants with a mean age of 25.5 years and older adults with a mean age of 74.3 years have been shown to make different predictions about how they would feel if they win or lose money.

Older adults reported feeling less negative than younger adults when they lost money. Who is to say that end-of-life decisions made when we are young are the right decisions for us when we are old?

My own research has shown that when people are cognitively depleted or physically tired, they feel more vulnerable and are more likely to engage in self-protection. Across different studies, depleted participants reported being less likely to engage in risky behaviors such as having unprotected sex and more likely to engage in risk-reduction behaviors such as getting tested for kidney diseases and chlamydia.

When people are not able to think properly or reason logically, they revert to relying on instincts. And the survival or self-preservation instinct is a very strong instinct. So if we are trying to make an important end-of-life decision for ourselves when we can still think properly by anticipating what we would want when we could no longer think properly, we may be off the mark.

If our mother’s will to live is what enabled her to come out of the coma and get off the ventilator, then withholding nutrients and let her waste away is equivalent to murdering her.

Many people have a will,  a legal document that specifies the distribution of one’s assets after death. People change their will as circumstances change and they re-decide who should inherit how much of their assets.

People should also have a living will, a document that allows people to state their wishes for end-of-life medical care, in the event they become unable to express their decision. Health-care providers are usually the ones to suggest or remind patients to have a living will.

But more than just having a living will may be the best practice. Given the frequency of poor performance on affect forecasting and given that perspectives and sentiments often change as we age, perhaps perhaps there needs to be a system in place to prompt regularly revisiting the terms of the living will.

Our mother is in a hospice/rehab facility. She takes pleasure in the daily visits and phone calls of her five children. We are doing our best.

Everyone needs to learn more about end-of-life experiences in order to make better end-of-life decisions for ourselves and for our loved ones.

Perhaps there can be a public policy on not just who has the legal authority to make end-of-life decisions, but also with guidance on how to make these decisions.

In the not too distant future, for people who are childless, these decisions are best not left to chance.

Complete Article ↪HERE↩!

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5 strange causes of death in the medieval period

Tasked today with confirming and certifying deaths resulting from unnatural or unknown causes, coroners were officially introduced in England in 1194, primarily for the purpose of collecting taxes. But their early records of deaths that occurred in unusual or suspicious circumstances offer an incredible insight into daily life, attitudes and living conditions in the Middle Ages that we would not otherwise be privy to…

Here, Janine Bryant from the University of Birmingham, who has researched medieval coroners’ rolls of three English counties – Warwickshire, London and Bedfordshire – reveals some of the most intriguing causes of death… 

1 Animals

Animals were responsible for numerous deaths in the medieval period.At Sherborne, Warwickshire in October 1394, a pig belonging to William Waller bit Robert Baron on the left elbow, causing his immediate death. Similarly, in London in May 1322 a sow wandered into a shop and mortally bit the head of one-month-old Johanna, daughter of Bernard de Irlaunde, who had been left alone in her cradle “at length”.

Cows appear to have been somewhat difficult to manage in the Middle Ages, and caused several deaths, including that of Henry Fremon at Amington, Warwickshire in July 1365. He was leading a calf next to water when it tossed him in and he drowned.

2 Drowning

People of all ages fell into wells, pits, ditches and rivers, and the coroners’ rolls of Warwickshire, London and Bedfordshire all record that drowning was responsible for the largest percentage of accidental deaths.

In August 1389 at Coventry, Johanna, daughter of John Appulton, was drawing water when she fell into the well. The incident was witnessed by a servant who ran to her aid, but while helping her fell in also. This was overheard by a third person who also went to their aid – he too fell in, and all three subsequently drowned.

3 Violence

While there are some regional and gender differences, approximately half of the entries in the medieval coroners’ rolls record violent deaths that occurred both within and outside of the home.

One domestic incident occurred at Houghton Regis, Bedfordshire in August 1276, when John Clarice was lying in bed with his wife, Joan, at the hour of midnight. “Madness took possession of him, and Joan, thinking he was seized by death, took a small scythe and cut his throat. She also took a bill-hook and struck him on the right side of the head so that his brain flowed forth and he immediately died”. Joan fled, seeking sanctuary in the local church, and later abjured the realm [swore an oath to leave the country forever].

Others deaths occurred in more mysterious circumstances: in Alvecote, Warwickshire in April 1366, Matilda, the daughter of John de Sheyle, was crossing some woods when she discovered an unknown teenage boy who had been feloniously killed and was found to have multiple wounds.

The rolls record that deaths frequently arose from disputes, and thus many seem to have been unpremeditated acts. The weapon often appeared to have been whatever was at hand, such as the case of Thomas de Routhe who died at Coventry in May 1355 after he was hit on the head with a stone.

4 Falls

There are many accounts of people who fell to their death, and they did so in a variety of ways: at Coventry in January 1389, Agnes Scryvein stood on a stool to cut down a wall candle. She fell off, landed on the stand for a yarn-winder, and ailed for two hours before eventually dying of her injuries.

At Aston, Warwickshire in October 1387, Richard Dousyng fell when a branch of the tree he had climbed broke. He landed on the ground, breaking his back, and died shortly after.

A London case occurred in January 1325 at around midnight when “John Toly rose naked from his bed and stood at a window 30 feet high to relieve himself towards the High Street. He accidentally fell headlong to the pavement, crushing his neck and other members, and thereupon died about cock-crow”.

5 Fun

The coroners’ rolls show that the Middle Ages weren’t all doom and gloom, and that people did actually have fun – although it occasionally ended in disaster.

At Elstow, Bedfordshire in May 1276, Osbert le Wuayl, “who was drunk and disgustingly over-fed” was returning home. “When he arrived at his house he had the falling sickness, fell upon a stone on the right side of his head, breaking the whole of his head and died by misadventure”. He was discovered the following morning when Agnes Ade of Elstow opened his door.

In Bramcote, Warwickshire in August 1366, John Beauchamp and John Cook were wrestling “without any malice or considered ill-will”. In the course of their game John Cook was tossed to the ground and died the following day from the injuries he sustained.

Complete Article ↪HERE↩!

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What is a good death?

How my mother planned hers is a good road map for me.

By Cynthia Miller-Idriss

Years ago, I called my brother to ask whether he would serve as my health proxy, charged with making decisions about my care in the event of some unforeseeable disaster.

“Sure,” he said affably, and then added: “You should be mine, too. I mean, if I lost a leg or something, I wouldn’t want to live. You’d pull the plug, right?”

Unsettled by our widely disparate visions of a good life — and a good death — I quickly hung up and called my sister instead.

But more than a decade later, as we saw our mother succumb to the final stages of an indignant, drawn-out death from Alzheimer’s disease, I find myself returning to my brother’s words. I still find his view of a good life terribly narrow: If I lost a leg, I would certainly want to live. But I have also come to appreciate his utter certainty about what a good life — and a good death — looks like for him.

Most of us avoid thinking about death, which makes a good one harder to come by. Two-thirds of citizens in the United States do not have a living will. Although most Americans say they want to die at home, few make plans to do so, and half will die in hospitals or nursing homes instead — a situation Katy Butler, author of “The Art of Dying Well,” attributes in part to our “culture-wide denial of death.”

Specifying what a good death means is especially important for dementia patients, who will lose the ability to express their own wishes as the disease progresses. In the early stages, patients have time to reflect and clarify what they do and do not want to happen at the end of their lives. But these options dry up quickly in later stages.

This means that most families are left with a terrible series of guesses about both medical interventions and everyday care. Are patients still enjoying eating, or do they just open their mouths as a primitive reflex, as one expert put it, unconnected to the ability to know what to do with food? What kinds of extraordinary resuscitation measures would they want medical staff to undertake?

In the absence of prior directives, such considerations are estimates at best. As I sat beside her one recent morning, my mother repeatedly reached a shaky hand to her head, patting the side of her face. Puzzled, I leaned in.

“Does your head hurt?” I wondered. She moved her palm with painstaking slowness from her head to mine, cradling my cheek. “Are you in pain?” I asked. Her mouth parted, but no words came. My eyes welled. Is this the path to the good death she wanted?

I may never know the answer. But over time, I did learn how to help her have a better one. One afternoon, after she was frightened by the efforts of two nurses in her residential dementia care facility to lift her from a wheelchair, a quiet phrase slipped out of her mouth. “There you go,” she murmured calmly, just as she had for a thousand childhood skinned knees and bee stings. She was consoling herself, I realized, and teaching me how to do it at the same time.

I learned to read micro-expressions, interpreting small facial shifts for fear, anxiety or contentment. I discovered I could calm her breathing with touch: holding her hand or settling my hand on her leg. She would visibly relax if I made the shushing sounds so second-nature from the sleepless nights I’d rocked my own babies.

“It’s okay, love, you’re okay, I’m here, I love you,” I would murmur, patting her shoulder. She would sigh, and close her eyes.

Some of the path to her good death was luck. Michelle, another dementia resident, decided she was my mother’s nurse. She sat beside her constantly, holding her hand and tucking small morsels of coffeecake between her lips. Whenever I arrived, Michelle would spring up, give me a surprisingly fierce hug and offer her informed assessment of how my mother was doing. “I take care of her,” she told me repeatedly, stroking my mother’s cheek.

Other parts of her good death came through privilege. She was the last of a generation of teachers to retire with a significant pension, easing the substantial financial burden of 24-hour care. My father’s own secure retirement enabled him to care for her at home for years, and to spend hours with her every day after she moved into a residential care facility.

But her good death is also a result of planning. Having laid out her wishes with some precision, my mother was part of the minority of Americans with an advanced directive specific to dementia. This means that we knew she wanted comfort feeding, but no feeding tube. A DNR (do not resuscitate) order helped guard against unnecessary pain and suffering — the broken ribs common in elderly resuscitation attempts, for example — in case of a catastrophic event. In the end, her wishes were followed: there were no tubes and no machines.

Some indications suggest more Americans are starting to think about what a good death will look like.

There are initiatives to encourage people to talk about end-of-life care. The Death over Dinner movement suggests groups of friends host dinner parties to process how they feel about death. “How we want to die,” the movement’s website prompts, “represents the most important and costly conversation America isn’t having.” Indeed, advising people on how to die well may be the logical next step for a burgeoning wellness industry that has captivated the attention of a generation trying to live a better, more balanced life.

There is no way to know for certain whether my mother’s death was the good death she wanted. But her willingness to think it through left us with less guesswork than most — and provided a good map for me as I tried to figure it out.

I am not sure I could ask for anything more.

Complete Article ↪HERE↩!

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Dead, buried, and growing…

How human composting could be a game-changer for the funeral industry

Recompose, a Seattle-based firm is the first to have developed a system that is able to transform a body into soil in about a month. It has come into focus after the state of Washington signed a bill to legalize human composting on May 22.

By Varsha Vasudevan

Human composting sounds like a strange thing when you first hear about it and it is natural that a person will be having questions as to What is it? How is it possible and if it is viable?

In fact, most of these questions emerged soon after the state of Washington signed a bill to legalize human composting. It allows licensed facilities to offer natural organic reduction, which turns a body, mixed with substances such as wood chips and straw, into about two wheelbarrows’ worth of soil in a span of several weeks.

This brings us to Recompose, a Seattle-based company which promises to build the first urban “organic reduction” funeral home in the country. It announced that it opened its Series A round of financing and has raised $6.75 million from investors for this project.

Recompose, which is a public benefit corporation, developed a system that is able to transform a body into soil in about a month. The corporation raised a seed round of $693,000 in investments last year, which it used to prove how safe the process is via a research pilot, called The Recomposition Science Project, with Washington State University.

The corporation also used the seed money to complete the engineering of its patent-pending system and then advocated for legislation in the state which passed with broad bipartisan support in April this year. The natural organic reduction process, which is the contained and accelerated conversion of human remains into soil, was legalized in Washington state on May 22 for the disposition of human remains.

Recompose is currently preparing to open Recompose|SEATTLE, which will be the first facility in the world where the service will be offered to the public. The service has been touted as an alternative to burial and cremation, which at this time is the most popular form of disposition in the country. With Recompose’s new service being offered, it will avoid the waste and emissions of both methods.

It is also said to sequester carbon emissions which could make it a potential game changer for the funeral industry. A lifecycle assessment that compared death care options had estimated that around 1.4 metric tons of carbon will be saved per person if they choose to go with Recompose’s service. The need of the hour in this day and age is sustainable funerary practices as 10,000 Americans turn 65 on a daily basis.

Katrina Spade, Founder and CEO of Recompose, said: “People want an option that aligns with the way they’ve lived their lives. They care about climate change, and they want to leave a legacy that gives back to the earth.” The numbers also add up with 64% of US citizens showing interest in eco-friendly funeral options in 2015.

Aside from the environmental impact, Recompose has stressed intention and authenticity. It also has the aim of helping families “create meaningful rituals around the death of a loved one”. The company is planning to open and operate composting centers where families can gather and where the bodies will be transformed into soil. With tremendous savings in carbon emissions and land usage, the corporation addresses the increasing demands for green alternatives.

Recompose stated: “If every WA resident chose recomposition as their after-death preference, we would save over a 1/2 million metric tons of CO2 in just 10 years. That’s the equivalent of the energy required to power 54,000 homes for a year.”

Senator Jamie Pederson, who sponsored the bill, said: “What I think is remarkable is that this universal, human experience of death remains almost untouched by technology. In fact, the only two methods for disposition of human remains that are authorized in our statutes have been with us for thousands of years: burying a body or burning a body.”

A broad community of supporters has formed around Recompose and many residents in the state took part in grassroots action to help the bill get passed. Spade said that she was ecstatic about the response from the community. “I heard from one person in her 90’s who called her senators and told them to please hurry on up and vote yes,” she added.

The founder now looks toward a future where every death helps create healthy soil and heal the planet. Spade said: “We asked ourselves how we could use nature — which has totally perfected the life/death cycle — as a model for human death care. Why shouldn’t our deaths give back to the earth and reconnect us with the natural cycles? At the same time, we’re aiming to provide the ritual, to help people have a more direct and conscious experience around this really important event.”

“As hard as it can be, the end of one’s life is a profound moment — for ourselves and for the friends and families we leave behind.” Now that the bill has been passed in Washington State, the Department of Licensing is creating a regulatory structure for the new disposition option pioneered by Recompose.

Complete Article ↪HERE↩!

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The impossible case of assisted death for people with dementia

Is it too much to ask people to follow through on previously expressed wishes for assisted death? An expert report suggests it may well be.

Dying with Dignity Canada’s CEO Shanaaz Gokool (centre) sits with Barb Brzezici (right), an assisted dying advocate whose mother died after a long battle with dementia, in Toronto, April 14, 2016.

When Canada legalized medically assisted death in 2016, the legislation excluded a trio of particularly difficult circumstances, committing to studying them in detail over the following two years. Those reports—on advance requests, mature minors and cases where a mental disorder is the sole diagnosis—were authored by three panels of eminent experts from a variety of disciplines, and in spite of the resolutely neutral and delicate language in the documents, they make for deeply compelling reading.

Of the three complex circumstances, it is advance requests—which would allow someone to set out terms for their medically assisted death, to be acted on at a future point when they no longer have decision-making capacity because of dementia, for example—that have drawn the greatest interest and agitation for change.

The working groups behind the reports were not asked for recommendations, but rather to provide detailed information on how other countries have grappled with these issues, what a modified Canadian law would need to take into account and how fields like ethics, philosophy, health care and sociology might help us puzzle through these issues.

And while they explicitly take no position on what the government should do, a close reading of the evidence the expert panel gathered makes it virtually impossible to imagine that advance requests for Canadians could exist and be acted upon.

That is not because the will isn’t there; many people with dementia or other illnesses that will eventually consume their cognitive capacity profoundly desire some sense of deliverance and control of their ending, for reasons that are easy to understand.

It is not because requiring help with every task of daily living, or being unable to communicate one’s thoughts or conjure up the names of loved ones is not a real form of suffering; for many people, that is just as intolerable as the spectre of a physically painful death.

And putting advance requests into practice doesn’t seem prohibitive because people who want them would be unsure about where to draw their line; indeed, that threshold is glaringly obvious for those to whom it matters most, and robust documentation and communication with health care providers and family members could provide much-needed clarity.

Rather, the reason it seems virtually impossible that Canada could have—and, crucially, use—advance requests is because it is simply too heavy a burden for those tasked with deciding when to follow through on the previously expressed wishes of the person before them, once that person can no longer meaningfully speak up for themselves.

“Evidence from international perspectives suggests there may be marked differences between stated opinion on hypothetical scenarios and actual practice,” the report notes. In other words, while people generally understand why others want advance requests and broadly support their availability, almost no one can bring themselves to act on them.

“It’s to be expected that these will be heavy decisions to be made, and I’m not sure that we would want them to be light, either,” says Jennifer Gibson, chair of the working group that examined advance requests for medical assistance in dying (MAID), and director of the University of Toronto Joint Centre for Bioethics.

Gibson’s group and the two other panels that examined MAID for mature minors and for people with a mental illness were chaired by former Supreme Court Justice Marie Deschamps and convened by the Council of Canadian Academies, a non-profit organization that “supports independent, science-based, authoritative expert assessments to inform public policy development.”

What is striking in reading the report on advance requests is how profound and deeply human it is, and how quickly the debate becomes almost dizzyingly existential—much more so even than the issue of assisted death in general. “There’s this human experience that we’re all sharing. We’re all in that together—that we are mortal, that we will die, that we will lose loved ones in our lifetime,” Gibson says. “That unavoidable vulnerability sort of encapsulates a lot of these policy and clinical and legal discussions that are unfolding.”

The report delves into concepts like the meaning of personal autonomy; how we care for those we love by shouldering the responsibility of making decisions when they no longer can; the concept of suffering and who defines it; how we weigh the interests of the patient against what their doctor and family are asked to handle; and which safeguards might help reassure those gathered at the bedside who have to make a decision.

“We can think about it as burden, but it’s not just about burden—it’s also about care….there is no question that burden is part of what comes with uncertainty. These are excruciating decisions that someone has to make on behalf of someone who is no longer decisionally capable,” says Benjamin Berger, a professor at Osgoode Hall Law School at York University and a member of the working group. “But a way of thinking about the burden is also, ‘Am I doing the right thing?’”

And a deeply conceptual sense of the self is central to the report: if in the present, you decide on and record a series of conditions under which you would no longer want to be alive, and you later become incapacitated, are your present and future selves the same person given how profoundly you’ve changed? If, once you are incapacitated, you appear perfectly content or even outright resistant to the MAID procedure you once requested, which version of you and which set of wishes and desires takes precedence, and why?

“Under what conditions might we expect that somebody would so radically lose those core compass points, if they lost capacity to make certain types of decisions, that they would become an entirely new person?” Gibson asks. “It is an existential question.”

And the report puzzles at length over this: can you really know from your present vantage point what your future self will want, how you might suffer or find joy in whatever your life looks like over the next horizon?

Research demonstrates that we are not very good at estimating what our quality of life would be if we fell ill or had some form of disability. This phenomenon, known as “the disability paradox,” is “pervasive,” the report notes. “The underestimation of quality of life by able-bodied or healthy people, rather than its overestimation by those living with a disability or chronic illness, drives the disability paradox,” the expert panel notes.

But again, in the debate over advance requests, this circles back to a deep concept of self: even if you are completely content once you are incapacitated, how much does that matter if your past, competent self loathed the notion of spending years in a long-term care facility needing help with every daily activity?

“Simply pointing to the idea that autonomy is respected and autonomy is important fails to wholly solve the most difficult issues in this field,” says Berger. “The question everybody is trying to ask is, understanding that autonomy is a core issue, what is the right method of ensuring that we respect autonomy?”

But for all of these sprawling legal, philosophical and ethical conundrums, it is when the report explores the experience of other jurisdictions with more experience practicing MAID or more liberal laws than Canada’s that the true difficulty in putting advance requests into practice for people with dementia becomes obvious.

Just four countries—Belgium, Colombia, Luxembourg and the Netherlands—allow advance requests for euthanasia in some form. However, “nearly all” of the information we have about advance requests in practice comes from the Netherlands, the report notes, because of “lack of implementation experience” in Colombia and Luxembourg, and very little detailed data available from Belgium.

The 2002 Dutch law that formally permitted the practice of euthanasia that had been going on for decades allowed for written advance requests for anyone aged 16 and older, in which they must clearly lay out what they consider unbearable suffering and when they would want euthanasia performed. Those would apply when people could no longer express their wishes and would have “the same status as an oral request made by a person with capacity,” the expert panel reports.

But while the annual reports from RTE, the regional review committees that govern euthanasia in the Netherlands, do not report the number of deaths due to advance requests, they do show that between 2002 and 2017, “all or most” of the patients who received euthanasia due to suffering from dementia were in the early stages of the disease and still had capacity to consent.

A study of 434 Dutch physicians between 2007 and 2008 found that while 110 had treated a patient with dementia who had an advance request, only three doctors had performed euthanasia in such a case (one doctor helped three people to die); all five of those patients too were “deemed competent and able to communicate their wishes.” The paper concluded that because doctors could not communicate with the patients otherwise, “Advance directives for euthanasia are never adhered to in the Netherlands in the case of people with advanced dementia, and their role in advance care planning and end-of-life care of people with advanced dementia is limited.”

Indeed, in 2017, a group of more than 460 Dutch geriatricians, psychiatrists and euthanasia specialists co-signed a public statement committing to never “provide a deadly injection to a person with advanced dementia on the basis of an advance request.”

And while family members of people with dementia support the idea of MAID if their loved one had an advance request, when it comes to acting on that, the majority—63 per cent in one study and 73 per cent in another—asked a doctor not to follow the request and actually provide euthanasia, but instead to simply forego life-sustaining treatment. “Some of the reasons given by relatives were that they were not ready for euthanasia, they did not feel the patient was suffering, and they could not ask for euthanasia when their loved one still had enjoyable moments,” the report explains.

Other Dutch studies show distinct contours in opinions on advance requests in cases of advanced dementia; the general public and family members of people with dementia view it more permissively than nurses and doctors, and doctors are most restrictive of all. “The authors of these studies hypothesized that this could be due to the different responsibilities of each group,” the working group wrote. “Physicians actually have to carry out a patient’s request, and when a patient cannot consent, this act comes with a heavy emotional burden.”

Here in Canada, the federal government has said it has no plans to alter the law to permit advance requests, even in the face of intense interest and pressure around the issue in a particular context a few months ago. In November, Audrey Parker, a vivacious Halifax woman with Stage 4 breast cancer, died by MAID two months earlier than she wanted to, because she feared cancer’s incursion into her brain might render her unable to provide final consent for the procedure if she waited. Parker spent her final months as the highly visible and compelling face of people like her, who are approved for MAID but forced to seek it earlier than they want to—or reduce badly needed pain medications—for fear they will lose the lucidity required to consent.

When it comes to concerns about determining when a patient with an advance request is ready for MAID, how clear their conditions are and whether they may have changed their mind if they can no longer communicate, the report suggest that cases like Parker’s would be the simplest and least controversial in which to permit advance requests. “These issues would likely not arise if a person wrote a request after they were already approved for MAID,” the working group notes. “In this case, they would be able to confirm their current desire for MAID themselves, and may even choose a date for the procedure.”

But when it comes to dementia—the condition which seems to inspire the strongest public desire for advance requests, and for which the disease trajectory is longer and more uncertain—the situation is much more difficult.

It is rarely useful to frame a public policy debate in terms of factions of winners and losers. But with the notion of advance requests for people with dementia, it is difficult to avoid the sense that in order for one group to get what it very understandably wants—a sense of control and escape from an existence that is at least as intolerable to some people as physical suffering—another group must shoulder a different sort of crushing burden—namely, the medical practitioners tasked with actually performing MAID and the family members or substitute decision makers who would have some role in sanctioning the procedure based on their loved one’s recorded wishes.

But Gibson argues that the solution to a heavy burden is not to make it light, but rather to ask what supports and measures would be required to bear it if such a thing were available in Canada. “And some members of the panel were really doubtful that anything would be sufficient to bridge those uncertainties, whereas others on the panel said, ‘I think we’ve got some experience with this, I think we could,’” she says. “There’s not going to be some external adjudicator to tell us we got it right.”

And while there is something distinctly fraught in decisions about MAID, she points out that families all over the country contend every day with life-and-death medical treatment decisions behalf of the people they love.

“It’s part of the ways in which we express love and caring for our loved ones, is we care for them even when they’re unable to care for themselves,” Gibson says. “We ought not to be surprised that these decisions are burdensome. And at the same time, they’re burdensome precisely because of these human connections that we have.”

The immense weight of these choices, then, is the price of admission for the bonds we share, and for the meaning we assign to life itself.

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