Death’s midwife helps terminally ill Canadians end their lives

By Robert Cribb

Reaching beneath a desk in her home office, Ruth von Fuchs pulls out a white plastic box containing a collection of tubes, valves and microwave turkey roasting bags.

This is her death kit.

With the blasé patter of an airline attendant explaining the protocols of oxygen mask use, the 71-year-old retired librarian removes a microwave bag and pulls it over her head, her face shrouded beneath clear plastic, her features blurring, her graying bun compressed into a soft helmet.

Slowly, her fingers begin to pinch a seal around her neck using Velcro strips she attached at the open end of the bag.

Her voice muffled and faint, she points to the spot where a tube is to be inserted.

“I would probably use helium,” she declares, deadpan. “A few deep breaths and you fade off.”

Von Fuchs is death’s midwife.

On four occasions, she has held the hands of terminally ill Canadians as they lived out their final wish: to pre-emptively end their lives with someone, anyone, there to provide humanity as they breathe their last breaths.

“No one wants to die alone,” says von Fuchs. “Most people just want someone there to hold their hand.”

She sits with people suffering with incurable diseases or perhaps their family members who wish to be with them if they take their own lives. She will pull out the visual aids, reveal her collection of items and explain how each works.

Down the road, when she decides the time is right, she will pull the kit out from under her desk one last time for her own do-it-yourself death, she says.

Whether von Fuchs is breaching Canadian criminal law prohibiting “assisted suicide” is a question mired in the complexities of legislative language and the mysteries of human desire.

Here’s what is clear: an underground movement of death facilitators has emerged to help Canadians execute their final wish despite threats of arrest and imprisonment.

Clandestine “hastenings” — self-planned deaths generally performed in private homes using drug cocktails or makeshift helium hoods — are a quietly growing phenomenon.

And experts say that growth can only continue as the country’s population ages and political intransigence continues to deny legalization of euthanasia and assisted death.

Interviews with six Canadians planning their own deaths reveal a perspective many of us can’t understand.

It is a state of mind guided by the inevitability of a physical deterioration so brutal and terrifying they have reached a desperate but unshakable conclusion: that surrender into final sleep is preferable to a descent into anguish.

Reaching that point comes after thoughtful — and often agonized — reflection, they say.

Once they are there, Canadian law makes it all the more complicated for them to follow through.

Finding someone to help means subjecting friends, family members or physicians to the possibility of a prison sentence.

Von Fuchs and other right-to-die believers have mapped out a legal grey area rife with life-and-death questions the courts and Parliament have yet to clearly answer.

At its core is this: who has the right to choose when and how we die?

“I think its one of the most profound issues of human rights of our time,” says Jocelyn Downie, a leading Canadian health law expert at Dalhousie University and author of Dying Justice: A Case for Decriminalizing Euthanasia and Assisted Suicide in Canada.

“I think we could be at the very moment of transformation.”

Public debate has re-emerged of late over Canada’s criminal prohibition on assisted death and euthanasia, with some prominent calls for legalization of assisted death in Canada from physicians, lawyers, politicians and ordinary Canadians.

Meanwhile, the federal government and most medical bodies remain vehement in their opposition to legislative change that would open the door to assisted killing.

All of that public debate has ignored this truth: despite criminal laws and social taboos, many Canadians are already choosing to end their lives with assistance from friends, physicians and, increasingly, a network of volunteer death supporters.

No one knows how many are secretly planning and executing their own deaths each year with support from others.

But those who bear witness say clandestine deaths are an increasingly attractive choice for terminally diseased Canadians who can no longer wait for legal authorization to end their lives.

“It’s just right that people have the opportunity to be autonomous and self-determined and less subject to the odious constraints of a state that would say, ‘We’ve spent so much time fighting death that we confer upon you a duty to live,’ ” declares Russel Ogden, a Vancouver criminologist who attends hastenings for Canadians who choose to end their lives.

The act of comforting the afflicted by helping them breathe their last breath is a tightrope walk performed in the shadows.

Generally executed in private homes, the process is legally complex and can be medically dicey.

Those who wish to take matters into their own hands must go about the grim process of illegally importing lethal drugs, in some cases from foreign websites, or piecing together equipment from items purchased at grocery or hardware stores.

Supportive death hasteners tend to operate quietly behind the scenes. All are nervous about attracting the attention of authorities.

In interviews, eight Canadians who have attended hastenings, ranging from an atheist physician to a retired United Church minister, were all careful to say they “support” — not “assist” — people they call “clients.”

The practical distinction may be subtle.

But it holds tremendous legal consequence.

While “assisting” a death is a criminal offence, “supporting” appears to be a sufficiently muddled concept to escape prosecution.

Police have questioned most of the eight, but no charges were pursued.

For those who wish to die, that provides little comfort.

Inside the system’s shadowy cracks, some Canadians attempting suicide fail in ways that leave them in worse condition than they were.

Some refuse medical treatment that would ease excruciating and intractable pain.

Others seek out people like Ruth von Fuchs.

Ask discreetly in right-to-choose circles and you’ll eventually hear about von Fuchs.

Visit her on a quiet west-end Toronto street and you’ll discover an elegant woman, her still-youthful face framed by a dramatic sweep of silvery hair pulled into an updo.

She’ll take you upstairs to a small second-floor office nook where she sits surrounded by overstuffed shelves containing books with titles such as A Good Death, Last Rights and ThePeaceful Pill Handbook.

At various times, two tabby cats and a couple of American Eskimo dogs will sniff at you as she speaks for an hour uninterrupted about the art and politics of self-prescribed death and how Canadian laws designed to protect life have created anguish.

“The knowledge that tomorrow will not be better than today — and likely worse — that is a type of incurable misery,” she says of a belief reinforced while she watched her partner of 21 years suffer through a long and wrenching battle with cancer in 2009.

“He didn’t give up soon enough. He had a failure of realism. I don’t want to go through a period of increasing decrepitude. I don’t want to lose my ability to know when to fold.”

Like those who share her beliefs, von Fuchs displays none of the discomfort many of us have with death.

“You can buy the helium tanks used for blowing up balloons at most Toys R Us stores,” she advises practically. “I’m a fan of using all the available technology.”

Things can go wrong, of course, when you’re relying on discount department store items to execute your final wishes.

“It’s tricky,” she warns. “You have to practise.”

Von Fuchs was recently contacted by an 87-year-old Ontario woman with multiple health issues who wishes to “go while the going is good.”

In a rare twist, the woman was referred to von Fuchs by her doctor.

“That doesn’t happen often,” she says. “But there are doctors who understand and want to provide this service to patients who need it and want it.”

Hasteners typically hold a view of death sanitized of religious or spiritual meaning.

Von Fuchs is a lifelong atheist who rejects the cultural celebration of courage in the face of disease.

She has no children to be impacted by her choice.

“My father died when I was 10 and I think that kept me from thinking that death was distant and out there,” she says. “I was made unable to have that delusion.

“People say you should always be hopeful. That’s foolishness. Just as there are unjustified fears there can be unjustified hope. Neither is good. We let people horrified by hopelessness endure a type of torture.”

The question of assisted death and euthanasia is more charged today than perhaps at any other point in Canadian history.

Public opinion polls show strong support for their legalization.

In a recent groundbreaking decision — now under appeal — a B.C. Supreme Court judge found in favour of Kelowna-area woman named Gloria Taylor, who was seeking the help of a physician to end her life in the face of her ALS (she died earlier this month of natural causes).

And both a Quebec commission and a Royal Society of Canada expert panel recently urged politicians to provide greater protections for Canadians who wish to end their own lives.

Quebec is promising to establish more lenient provincial laws that could give doctors and their patients a degree of latitude that could result in a form of assisted suicide without prosecution.

“We’ve never been so close to a permissive regime,” says Downie. “If Quebec goes through with what it has said it will do, that will be transformative for Quebec, and then I think you’ll see a domino effect across the country. That could be the pivot moment.”

But resistance also remains vigorous.

The medical profession and successive federal governments have firmly rejected calls for change, affirming that assisted death is both unethical and criminal.

When a private member’s bill proposing to legalize assisted suicide was introduced in 2009, it was overwhelmingly defeated by a vote of 228 to 59.

Anti-euthanasia organizations also hold powerful voices in the debate, arguing that legalization of self-engineered deaths will create a slippery slope that could end with vulnerable Canadians being pressured by their families or their physicians to choose assisted death.

“While I can cause my own death, the question is whether there should be a line in the sand for someone else causing my death,” says Alex Schadenberg, executive director of Canada’s Euthanasia Prevention Coalition.

“Our answer is, ‘Absolutely.’ You can’t always be assured you’re safe when someone else has influence over your death.”

Schadenberg, who has an autistic son, was drawn to the anti-euthanasia movement in the late 1990s, inspired in large part by raging public debate over the death of Tracy Latimer at the hands of her father, Robert.

“What made me particularly concerned was the vulnerability of persons with disabilities and the growing public tolerance for euthanasia and how it might impact people with disabilities.”

Latimer was released from prison in 2010, a decade after the Supreme Court upheld his conviction for assisting in the death of his severely disabled 12-year-old daughter.

It remains an object lesson of the kind of high-stakes legal fate that Canada’s right-to-assisted-death supporters are trying to delicately negotiate.

But more than ever before, advocates across the debate seem to agree we have reached a defining moment on the question of assisted suicide.

And the emergence of a death-hastening movement is perhaps the most conspicuous sign of the underground rebellion.

“The culture is definitely changing on this,” says University of Toronto bioethicist Kerry Bowman. “If people want this service and people are willing to provide it, and it’s done in an objective way, it’s coming from the people. There’s no way that any of this could be part of direct health-care system. It would be too much of a conflict from an ethical point of view.”

Vancouver-based Ogden has been researching assisted death as a criminologist since 1991 and began pushing for legal reform with the birth of his Farewell Foundation last year.

Behind the political advocacy, he’s also quietly performed the far more ethically thorny work of supporting those who can’t wait for the legal and political debate to play out.

He has attended the deaths of five Canadians and an American who decided that suicide was preferable to a life lived with incurable disease.

Each was a relative stranger to him — no childhood bonds or family ties. He generally gets to know them over a series of conversations spanning up to a year prior to their death.

He accompanied them to a place of their choosing, in one case a Swiss medical clinic called Dignitas that specializes in legal assisted suicides.

In each case, he watched as they swallowed a cocktail of drugs or inhaled helium they had independently acquired to complete the deed, he says.

In the moment, he was a quiet presence, a witness, observing as their final breaths gradually faded into silence.

When it was over, he typically picked up the phone and called the authorities to report the death.

“They’d like their deaths to be documented for what they are to law enforcement and the coroner,” he says. “We’re prepared to do that.”

After studying assisted suicide for two decades, he believes what he is doing is both legal and desperately needed in Canada.

Nobody, including police, seems to be able to prove otherwise.

“There’s no obligations for citizens to live lives that they believe aren’t worth living. We’re not bypassing any law. We’re trying to act within it.”

Does counselling someone in the methods of committing suicide qualify as assistance? What about providing the equipment or medications?

Ogden will do neither, he says.

But how, say critics, can death hasteners like Ogden ensure medically safe procedures or assess the mental capacity of those vowing to end their own lives as lay people without medical or psychological training?

According the Farewell Foundation’s procedures, those seeking assistance meet with a support team to ensure they are capable of making the decision.

“If a member’s capacity is in doubt, greater scrutiny and additional consultation is necessary,” the policy reads. “The support team must take care to ensure that a decision for self-chosen death is informed and voluntary.”

The methods chosen for those deaths must be “humane and non-violent” in order to “prevent impulsive acts.”

Ogden says not everyone who seeks supports receives it.

“I’ve looked at situations where people were planning their death and told them, ‘If this is the way you’re planning to end your life, I wouldn’t be willing to attend.’ What we are advocating is people taking advantage of humane, non-disfiguring methods and that they do their own research on how to carry out the various steps. It’s about personal responsibility.”

If the foundation agrees to attend at a death, at least two members will be present at the appointed time and place, and its policies require reporting to the coroner.

Ogden concedes that his members are not trained professionals.

“We don’t see a need for training because the person doesn’t need to know how life is ended because they aren’t going to be involved. The core requirement is to sit on your hands. It would be a violation of the law to intervene. If someone is struggling to end their life and you step in and finish the job, that’s murder.”

No matter how controversial it may be, a death wish appears to be worth the risk for many Canadians.

Five members of the Farewell Foundation have taken their own lives since August, says Ogden. While each consulted with him on their plans, they ended up committing suicide without his assistance.

Toronto-based Dying With Dignity, a registered charity that supports Canadians on right-to-die issues, receives more than 200 calls a year, many from people seeking information about how to end their own life.

Wanda Morris, Dying With Dignity’s executive director, says the experience of bearing witness to a death hastening last year has only reinforced her convictions.

“Just to witness the gratitude this person had . . . I really get that there is some suffering that only death can end,” she said.

Morris was drawn to this work in the aftermath of her father-in-law’s chilling death.

In the end, the dementia that stole his cognitive abilities also made him violent.

One day, he struck out at his daughter, who was taking care of him, hitting her across the face, she says.

Then came the nursing home and the restraints.

“My husband said, ‘You can’t ever let something like that happen to me,’ ” she recalls, wiping her eyes. “I love my husband dearly, so I decided I had to get informed and see what our choices are.”

Those choices remain limited in the mainstream health-care system, which views the work of amateur death hasteners with suspicion.

When Morris recently approached the Ontario College of Nurses seeking help in finding nurses interested in helping clients end their lives, the response was definitive.

“The (College of Nurses of Ontario) has stated that euthanasia and assisted suicide is illegal, and there is no role for nurses in facilitating these activities,” the college responded in a letter of response to Morris.

Linda Marie Pacheco, a palliative care nurse in Toronto, wanted to apply for the job.

But she was told by her college that doing so would risk her licence, even if she wasn’t hired as a registered nurse.

“They’re saying no matter what job I do, if it’s in the field of health care, I have to uphold he rules of the college,” she says. “That surprised me.”

After two decades of caring for patients with intractable disease, she was drawn to the notion of educating people about their options, providing alternatives, ensuring they don’t make botched attempts at suicide that could leave them even worse off.

“I can’t stand by and let people suffer,” she says. “I see these people as angels of mercy to help alleviate suffering. I’ve been at the bedside of many people in anguish and it’s horrible. I got excited about being able to give these people the education they need and respect their rights as a human being.”

Ogden’s work as a death facilitator has led to police questioning on seven occasions, he says. He was subpoenaed three times to court (in 1994, 2003 and 2004).

Following another death he witnessed in 2007, Vancouver police officers “swarmed the area” and took him into custody, he says.

But they closed the file without laying charges.

“There’s no offence in attending a suicide,” says Ogden. “While it may be repugnant and ghoulish, it’s not against the law.”

He has also paid a high professional price for his work.

As an academic studying suicide and end-of-life issues in part by observing them, Ogden ran into problems with Kwantlen Polytechnic University in B.C., where he was a professor.

In 2006, the school withdrew approval for a research proposal he submitted, citing legal implications.

Today, he remains listed on the school’s website as a faculty member on leave and he is included in a B.C. public salary disclosure list as having earned just over $85,000 last year.

But he says he hasn’t been scheduled by the university to teach any courses since 2008.

A Kwantlen spokesperson said the professor is conducting “independent research.”

“I miss teaching,” says Ogden, “and not doing it is challenging to the identity of a university instructor.”

Ruth Von Fuchs is eating porridge with milk and brown sugar as she faces out toward her backyard, summer morning light bathing her in a luminous glow.

She’s imagining the future.

“If I do live long enough to see the law changed, I will have a death day party,” she finally says, still staring out the window as if picturing her guests standing amid the greenery below.

Her brother and her sister-in-law would come, she says. She’d ask the contractor working on her home renovations.

She’d also invite her nephew to come with his video camera and use the occasion to create an instructional video for others planning a home death.

She would want company. People to hold her hand.

But they won’t come if Canadian laws remain unchanged, she predicts.

“When it’s surrounded in a kind of criminality, people just want to run away.”

There’s a long pause, her eyes still fixed on the backyard.

“Life is not fair. This is not a beautiful world. Sufferers should have a choice.”

Complete Article HERE!

None of Us Get Out of Here Alive

Another wonderful review of The Amateur’s Guide To Death and Dying; Enhancing the End of Life has appeared. This time the review comes from my colleague, the very talented author, Mikaya Heart. Her review appears on the Blogging Authors website.


Click on the Blogging Authors’ banner above for the full review.

In our society, death is a taboo subject, and many people won’t talk about it at all. I’ve always been fascinated with the process of dying, and how someone’s energy remains after they die, often affecting us on a deep level. I recently read a great book on the subject by Richard Wagner. A gay man, an ex-Catholic priest, and a psychotherapist, Richard was first exposed to the process of dying during the AIDS epidemic in the early eighties when his friends were dying in droves. I won’t say any more about his own journey since it’s all in the book, but rest assured—he knows what he’s talking about. As he says, none of us will get out of here alive—so let’s talk about how to make that process of transition easier.

Richard started a group called Paradigm specifically designed to help sick, elder and dying people and their friends and families avoid the kind of nightmares that he had seen repeated again and again, based on society’s phobia about death. Perceiving that basic information is being withheld from dying people, he ran countless groups on death and dying in the San Francisco Bay Area, and has helped thousands of individuals over the years. He took groups of ten people for ten weeks, inviting various experts to come and give presentations on different aspects of what is involved in dying: legalities such as wills and executors; talking to one’s family and friends; assisted dying; what to expect of your body as it gives up; spiritual aspects of dying, and other topics.

The Amateur’s Guide To Death and Dying is an in-depth account of one of these courses, profiling the ten people who attended it, each chapter covering a different week. Those ten fictional characters are, Richard says, “composites” of some of the real people who took his course over the years that he ran it. The reader gets to know the individuals very well (sometimes painfully well) throughout the course of the book, as they reveal their deepest inner fears in the safety of the group. They all become more familiar with the concept of death and how to deal with it. Some of them, interestingly, move further away from it, while some go the other way. They all become more empowered. This book is written from a personal perspective, which is essential for any good writing on such a personal subject. Richard deserves congratulations for being brave enough to deal with such a difficult topic in a very open, accepting and compassionate manner.

My only complaint is that I wanted more. Since this book is quite long enough as is, I hope that Richard and others will consider writing more books. Because, as a society, we have failed miserably in talking about the realities of death and dying, there is a great deal still to be discussed. How can relatives and friends help a person who is dying? Do dying people benefit from getting permission to die from those they are close to? How can we change our desperate need to hold on to what we call the state of living even when it is clearly time to let go? How can we learn to relate to the positive aspects of death? How does the energy of an individual affect us when they are no longer present in a body? Richard’s book touches on some of these very profound questions, but they (and many others) need to be addressed in greater depth.

Mikaya Heart is an award-winning author who writes on subjects as varied as orgasm, shamanism, sports, lesbianism, politics and travel. Her memoir, My Sweet Wild Dance, which won a Golden Crown Literary Award, was described as “soul-refreshment of the highest order.” Mikaya uses shamanic methods to teach people how to operate from a place of trust instead of fear.

End of life options worthy of attention

By Joe Timmerman

Death is a very difficult topic to discuss. It’s not a subject that most people enjoy pondering. It is especially difficult to discuss with someone whose death may be imminent. Like many issues, it might be easier to just avoid the topic altogether. However, as is often the case, pretending the issue doesn’t exist won’t make it go away, and can often make the end result more difficult to deal with. Thus, the news the Madison medical community will start providing end-of-life planning as a standard patient service is welcome, indeed.

End-of-life planning involves sitting down and coming up with an “advanced directive.” An advanced directive is essentially a set of written instructions regarding a patient’s preferred medical care that are carried out in the event the patient is no longer able to make those decisions. For example, a patient might specify that, if they should enter into a vegetative state, they should be taken off the ventilator and allowed to die.

Preparations for death, such as end-of-life planning, are becoming increasingly accepted in the medical community. According to guidelines published by the American Society of Clinical Oncology, all terminally ill patients should sit down and discuss their end-of-life wishes with their family and health care team.

Advanced directives are beneficial for a variety of reasons. To begin with, people should have their health care administered according to their own preferences. If someone wishes to be kept alive on a ventilator, then he or she should be able to. If someone wishes instead not to be put on a ventilator, then they shouldn’t have to be put on one against their will. Just because someone can’t communicate his or her preference doesn’t mean it shouldn’t be honored. Either way, this is utility enhancing for the patient.

As for the health care provider and the patient’s family, they aren’t forced to make life-or-death for someone else. Making these decisions are, as one might expect, extremely taxing, and everyone is better off if the patient makes his or her own decision ahead of time rather than leaving it to a third party. In a powerful Time Magazine article, Joe Klein recounts his difficult experience making these decisions for his own parents. As he writes, “I spent the next five months as a death panel for both my mother and my father.” He later writes he was “extremely fortunate” to transfer his ailing parents to a health care provider that was much more willing to candidly discuss death.

Coming up with an advanced directive also helps to keep health care costs down. CBS News reports Medicare spent $50 billion in 2009 on doctors and hospitals over the last two months of patients’ lives. The kicker? “20 to 30 percent of these medical expenditures may have had no meaningful impact.”

Over the course of one year, Medicare alone spent as much as $15 billion of treatment had no positive effect on patients’ quality of life. This is a prime example of wasteful spending that, in today’s age of fashionable austerity, needs to be eliminated. A significant portion of this spending could be eliminated if people were only kept alive as long as they wished to be.

It might seem that doing anything less than everything to extend a person’s life would be unethical. However, if the person doesn’t want to be kept alive though extraordinary measures only to suffer for longer, their wish should be honored. This can only be accomplished through people having candid discussions with their families and doctors. The fact that local health care providers are starting to encourage these discussions is good news for all Madisonians.

New Tory health chief Anna Soubry slams law that forces terminally ill Brits to die abroad

NEWLY promoted UK health minister Anna Soubry said terminally ill people should be able to receive assistance in ending their lives in the UK.

DAVID CAMERON’S new health minister yesterday slated current laws on assisted ­suicide as “ridiculous”.

Newly promoted UK health minister Anna Soubry said terminally ill people should be able to receive assistance in ending their lives in the UK.

Last night, her comments were ­welcomed by independent MSP Margo MacDonald, who has fought to have assisted suicide legalised in Scotland.

MacDonald said: “These comments are very welcome. They are more realistic and in tune with public opinion than what we have heard from politicians in all parties, with one or two laudable exceptions.

“I am absolutely delighted that the wind is blowing that way.”

The Lothian MSP, who has Parkinson’s disease, has attempted to change the
law in Scotland with her End of Life ­Assistance Bill.

The bill was rejected by MSPs last year but she has vowed to reintroduce it.

She said: “I think this will help MSPs, particularly the newer ones, feel freer about supporting it and we will have a greater chance of success this time.”

Soubry called for greater “honesty” about when prosecutions would be brought for helping relatives to die.

She said: “You can’t say to a doctor or a nurse, ‘You can kill this person’.”

Soubry added: “I think it’s ridiculous and appalling that people have to go abroad to end their life instead of being able to end their life at home. The rules we have about who we don’t prosecute allow things to happen but there’s a good ­argument that we should be a bit more honest about it.”

Her comments came after locked-in syndrome sufferer Tony Nicklinson died a week after he lost his legal bid to end his life with a doctor’s help.

His widow Jane welcomed Soubry’s comments.

She said: “We’re pleased that she has come forward and said this. It does open the debate even more, having an MP who’s willing to stick her neck out and actually support assisted suicide.”

But anti-euthanasia group SPUC ­Pro-Life general secretary Paul Tully said: “The goodwill among the public towards people with disabilities has never been higher than at the Paralympic Games.

“Suddenly they are faced with the ­prospect that if they struggle with suicidal feelings, they will be given help to die instead of care and support.”

Complete Article HERE!

Meditation – Death by Helen Hunt Jackson

Death by Helen Hunt Jackson

My body, eh? Friend Death, how now?
Why all this tedious pomp of writ?
Thou hast reclaimed it sure and slow
For half a century bit by bit.

In faith thou knowest more to-day
Than I do, where it can be found!
This shrivelled lump of suffering clay,
To which I am now chained and bound,

Has not of kith or kin a trace
To the good body once I bore;
Look at this shrunken, ghastly face:
Didst ever see that face before?

Ah, well, friend Death, good friend thou art;
Thy only fault thy lagging gait,
Mistaken pity in thy heart
For timorous ones that bid thee wait.

Do quickly all thou hast to do,
Nor I nor mine will hindrance make;
I shall be free when thou art through;
I grudge thee nought that thou must take!

Stay! I have lied; I grudge thee one,
Yes, two I grudge thee at this last,–
Two members which have faithful done
My will and bidding in the past.

I grudge thee this right hand of mine;
I grudge thee this quick-beating heart;
They never gave me coward sign,
Nor played me once the traitor’s part.

I see now why in olden days
Men in barbaric love or hate
Nailed enemies’ hands at wild crossways,
Shrined leaders’ hearts in costly state:

The symbol, sign and instrument
Of each soul’s purpose, passion, strife,
Of fires in which are poured and spent
Their all of love, their all of life.

O feeble, mighty human hand!
O fragile, dauntless human heart!
The universe holds nothing planned
With such sublime, transcendent art!

Yes, Death, I own I grudge thee mine
Poor little hand, so feeble now;
Its wrinkled palm, its altered line,
Its veins so pallid and so slow —

Ah, well, friend Death, good friend thou art;
I shall be free when thou art through.
Take all there is — take hand and heart;
There must be somewhere work to do.

A push to encourage end-of-life discussions

By Kay Lazar

Rabbi Howard Kummer spent years guiding others through wrenching life-and-death decisions. As a chaplain at Newton-Wellesley Hospital, he ministered to patients tethered to life support machines, and would later tell his wife he never wanted to be kept alive that way.

But he did not get around to discussing his feelings with their three grown children, even after he was diagnosed with a brain tumor.

Then he had a catastrophic brain hemorrhage that left him near death, and his children were unprepared. They hesitated when a physician suggested stopping aggressive treatment.

“I knew what he wanted,” said his wife, Nancy. “I had had this discussion many times with him, but the kids hadn’t and they weren’t ready to let go.”

With death and dying, most Americans engage in a conspiracy of silence, surveys show, failing to discuss their final wishes until it is too late. A new Massachusetts-based coalition aims to change that.

Called The Conversation Project, the national campaign encourages open and honest discussions among families and friends about how they want to live life at the end, so that their wishes will be followed.

There have been other smaller-scale efforts to spark discussions among families and with doctors, but The Conversation Project has big financial backing from foundations and big names, including Dr. Don Berwick, former head of the Medicare program, and former Boston Globe columnist Ellen Goodman, a winner of the Pulitzer Prize.

The effort also has a partnership with ABC News.

A “starter kit” on the project’s website helps jumpstart end-of-life conversations. It asks visitors to answer this question: “What matters to me at the end of my life is _____.”

It suggests gentle ways for people of all ages to prompt a conversation with family or friends, by saying, for instance, “I need your help with something.” And it describes issues for people to think and talk about, from the level of medical interventions they might want, to a primer about legal documents that stipulate a person’s wishes.

The project was cofounded by Goodman, who spent a career communicating other people’s stories but neglected to have a detailed conversation with her mother about her preferences.

“I knew my mother’s attitudes in the most general sense,” she said. “But I never thought to ask my mother, for instance, where on the continuum are you, about being afraid of not getting enough care and getting too much care.”

Goodman said that because they had not had those discussions before her mother was incapacitated from dementia, she was torn while making complex decisions for her medical care.

Goodman’s mother died six years ago.

The project’s website suggests people have an ongoing conversation, not one that happens in one sitting. Writing a letter can be one way to start the conversation.

“DON’T PANIC — IT’S OK,” is how Karen Boudreau, a family physician, started a hand-written letter to her family when she became involved with The Conversation Project during its formation.

At the time, she was a senior vice president at the Institute for Healthcare Improvement, a Cambridge organization that is collaborating on the project.

Boudreau’s letter advises her family members to not worry or feel guilty if they have to make decisions for her care that they had not previously thought to discuss.

“If you’re faced with a snap decision, don’t panic — choose comfort, choose home, choose less intervention, choose to be together, at my side, holding my hand, singing, laughing, loving, celebrating and carrying on,” wrote Boudreau, now chief medical officer at Boston Medical Center’s HealthNet Plan, and, at age 51, in good health. “I will keep loving you and watching you and being proud of you.”

The Kummer children, including one now a rabbi herself, ultimately chose less intervention, too, after their 67-year-old father’s brain hemorrhage.

They signed a form to not have him resuscitated if his heart failed.

“In a very short time, we put together a nice little ceremony,” said Nancy Kummer, now 81 and living in Dedham. “One of them talked to him, one sang songs to him, one read some psalms to him, each in his or her own way, and then we said our goodbyes.”

Yet 13 years after her husband’s death, Kummer admitted that she has not had an in-depth conversation with her children — now ages 52, 51, and 47 — about her end-of-life wishes.

Nancy Kummer, a former social worker, used to counsel people with terminal illnesses and now lives in a retirement community where, she said, she is “surrounded by increasing fragility and illness and vulnerability so it’s in my face all the time.”

Still, she is having a hard time starting that conversation.

“There is a human tendency,” she said, “to postpone uncomfortable or unpleasant tasks.”

Getting Americans to put their end-of-life wishes in writing has not fared much better.

More than three-quarters of those surveyed said it is important to express their written preferences, yet fewer than 1 in 4 have done that, according to a recent survey by the California HealthCare Foundation.

But momentum may be building. Since its launch in October 2008, there has been steadily growing traffic on the website Engage with Grace, an online campaign aimed at prompting end-of-life discussions, said cofounder Alexandra Drane, who runs a Danvers software company focused on health care.

Her firm particularly seems to be hearing from a lot of baby boomers who have had bad experiences with decision-making in their parents’ deaths because they failed to have meaningful conversations beforehand, and now want to help others avoid that mistake.

“We are coming across more friends, and kindred spirits,” Drane said, “who have decided this will be their mission.”

Complete Article HERE!

The GroundSwell Project Review

More marvelous news! The second amazing review of The Amateur’s Guide To Death and Dying; Enhancing the End of Life has appeared in as many days.

The Amateur’s Guide to Death and Dying
Review by Emilie Collyer

‘None of the hard times I’ve seen, and I’ve seen plenty, lasted forever. Even this dying business will be over one day. I’ll just wake up dead one morning and that will that. What can I tell you?’

So says Max, an 86 year old man dying from stomach cancer. He’s one of ten group members you’ll meet and get to know when reading The Amateur’s Guide to Death and Dying.

The book is written by Richard Wagner who runs a non profit organisation called PARADIGM Programs Inc whose mission is ‘enhancing the end of life’. One of the main initiatives of the organisation is a ten week structured support program that focuses on death and dying. It is primarily targeted at people diagnosed with a terminal illness, but anyone can do the course.

The Amateur’s Guide to Death and Dying is a ‘workbook’ that takes the reader through the course. There are ten chapters that cover a wide range of territory. It is presented as a combination of group sessions, homework tasks and reflection exercises. There is a detailed blurb about each person and from then on we ‘hear’ from them in the first person, as if they are speaking directly to us in a group situation. They are fictional creations, but based on amalgams of real people. Wagner evokes their personalities well. I felt like I was hearing from ten distinct voices.

The content is comprehensive. We start with a discussion about perceptions of death, including why it still seems to be a taboo subject for so many people. Raul, 18, has polycystic kidney disease. He says how sick he is of ‘fightin’ something I can’t win.’ He hasn’t told his parents about attending the group because he knows how scared they are to accept the fact that he won’t live a long life: ‘They want me to keep praying to all these saints for some kinda stupid miracle. There are so many saints I can’t even remember all their names.’

From there, chapters move through many subjects and tasks including: writing your own obituary, legal, medical and financial matters, sexuality and body image for people who are dying, spirituality and belief, what happens to the body when we die, and the question of assisted, or pro-active dying.

The book is not always an easy read. It opens up questions about our own lives, including regrets and lost chances: ‘I haven’t done anything extraordinary, never won an award, never had my picture in the paper, never went to college, never even had a real job. I’m just an old woman who hasn’t anything to show for her life. And that makes me sad,’ says Janice, 62.

Reading such personal and intense stories has a significant emotional impact. I had to read slowly and take time out on occasion. And of course each story, task and provocation is designed to bring to the surface our own fears, hopes and regrets about death. This is a stated goal of the book and Wagner’s work in general. He is seeking a radical shift in how we perceive dying, specifically in terms of integrating it more consciously into every day life.

It’s not just about increasing awareness. Wagner believes we can live more full lives by embracing death. One of his motivations for creating the program and the book was because: ‘… the wisdom people come to during the dying process often died with them. There simply wasn’t a medium for collecting this abundant wisdom and thus it was frequently lost.’

There is a satisfying narrative arc to the book. Each of the participants comes to a sense of peace and acceptance about their situation. Many have renewed hope and vigour. ‘I feel like I’ve been able to look death in the face these past ten weeks and I didn’t flinch. So maybe, just maybe, death is not so foreboding after all,’ says Kevin, 39.

Some of the final statements in the evaluation section are a little pat. The book allows a neatness and sense of conclusion that is generally lacking in life with all its messiness. This is a minor point though, as the book’s content never shies away from the difficult and the unresolved.

The Amateur’s Guide to Death and Dying is a useful and practical tool for any person approaching their own death, or the death of a loved one and would make a valuable resource for health and community organisations working in this area.

Spending focussed time meditating on the end of life is not something we do often. It’s confronting to face our own mortality, but there’s something vital, even exhilarating about the brief moments of insight that can come. I’d recommend The Amateur’s Guide to Death and Dying to anyone seeking to engage with questions about death and the meaning of life.

Full Review HERE!