Happy Halloween!

It’s regrettable that in our culture there is only one day out of the whole year that we get to stare death in the face without flinching. In fact, we go out of our way to make a mockery of it. I know it’s a little schizophrenic, but there ya have it. I’m certain it’s possible to have a more integrated and less troubling appreciation of the great universal of life, but until then, I guess we’ll just have to settle for this one day for debunking death.

Enjoy the slideshow!

Facing Mortality Head On

I’m proud to announce the posting of an interview with me about my new book — The Amateur’s Guide To Death and Dying; Enhancing the End of Life. The interview is posted on IJ Wood’s site, Conscious Departures.

Click on the Conscious Departures banner above for the full interview.

Several months ago I became I became acquainted with Richard Wagner Ph.D and had the pleasure to read his book The Amateur’s Guide to Death and Dying.  His work with people facing end of life issues is inspired and admire his fearless approach to going into territory most consider taboo and awkward.  Richard Wagner has been working with terminally ill, chronically ill, elder and dying people in hospital, hospice, and home settings for over 30 years. He facilitates support groups for care-providers and clinical personnel, and provides grief counseling for survivors both individually and in group settings.

He founded Paradigm Programs Inc, an innovative nonprofit organization with a mission to be an outreach and resource for terminally ill, chronically ill, elder and dying people. He was honored with the prestigious University of California San Francisco Chancellor’s Award for Public Service in 1999 for his work with sick, elder and dying people.

His book is a valuable contribution to the body of work available for coming to terms with end of life issues and one I wish I had when K was alive. Having been the primary caregiver and the one person who was with K day and night using a tool like this would have been invaluable. There comes a point where a person just doesn’t have the strength to do much, but they still do want to communicate. I could imagine K and I reading it together (me reading it aloud), and doing the exercises.  It could have provided a great format for the both of us to have those important and uncomfortable, conversations in an engaging way. At the very least it would have provided us a good platform to work with.

This is not a passive book. Richard Wagner takes an approach that makes the reader part of the story.  In it you become one of the participants in his work group along with a number of people coming from different cultural backgrounds dealing with a variety of issues from cancer to old age. You are a participant, not a fly on the wall, and if you allow yourself to enter his world and take the exercises to heart you will find yourself going through a very fulfilling process. For this reason I feel that this book must be approached when you or your loved one has the appropriate energy and mental acuity to take it all in. There are 10 members in the group, and if you intend to follow their contribution to the group it takes some effort.

I was so impressed with Richard’s approach and the experience behind the book that I felt I needed to meet him and do an interview. We met by phone. Here are his responses to my questions:

IJ: In your years as a health professional, what do you consider the biggest lessons you’ve learned about caring for someone with a terminal illness?

RW: I tend to lump health care professionals into two groups — healing and helping.  As a psychotherapist, I consider myself as part of the later group — those who help.

The biggest lesson I’ve learned is that precious few of us are able to face our mortality on our own.  This tends to complicate an already difficult situation, because few of us who are facing our mortality have people around willing to walk through this with us.

When I started to be present to sick, elder and dying people some 30+ years ago I began to see certain patterns develop.  Despite the uniqueness of each death I noticed two things that all these deaths had in common; they were difficult and lonely affairs.  Difficult because, in our culture we have a hard time recognizing when things are coming to an end, especially the things we enjoy.  This is a problem because being unable to acknowledge the end of something makes saying good-bye and thank you virtually impossible.  They were lonely affairs, because those who were dying often felt useless and disconnected.  It was like they were dead before they were dead.

IJ: How has this affected you personally?

RW: This had a profound effect on me.  Because I soon began to realize that the marginal status our culture assigns to the end of life, with all its fear, anxiety, isolation and anger is inevitably what each of us will inherit in our dying days.  I either had to come up with an alternative approach, or I would crash and burn.  I saw so many valiant fellow healing and helping professionals burn out; they just couldn’t face their inner turmoil and grief any longer so they had to leave the work they were doing.  And I did not want that to happen to me.

I figured there had to be a better way to deal with this fundamental fact of life.  So I decided to take a fresh look at my own mortality, because that seemed to be the most likely place to begin if I wanted to help others face their mortality.  In time, I became less anxious.  The monstrous thing I feared for so long was being transformed.  I was able to sit with death and not be afraid.  Death was no longer the enemy, she was becoming what St. Francis called her ‘sister death.’  Besides, death links us to the great round of nature.  I found that comforting.

When I began to ask the sick, elder and dying people I was working with if they wanted to join me in this endeavor I discovered most were up for the adventure.  I mean it was a no-brainer for most.  They knew better than I that few opportunities exist for them to connect with others similarly challenged in a purposeful life-affirming way.  I was encouraging them to take a lead role in orchestrating their finales; they were no longer expected to be unobtrusive, dependent on the kindness of others and to wait patiently for the curtain to fall.

IJ: What was your goal and inspiration behind writing the book The Amateur’s Guide to Death and Dying?

RW: Let me take you back to the early 1990’s.  I was successful in getting some like-minded people together for mortality-oriented support groups.  Initially there was some resistance, however, because most of the people who joined my early groups were only familiar with disease-based groups.  People with cancer met with other people with cancer if they met with anyone at all; people with HIV only met with other people with HIV if they met with anyone at all.  But I was proposing something really radical.  I was suggesting that facing one’s mortality had very little to do with a disease process, it had to do with simply being alive.  I had to keep reminding them that the thing that connected us was our mortality, not a disease, or aging process.

I figured if our focus is our mortality, we wouldn’t get bogged down with the medical issues we faced as “patients.”  This freed us up to find practical solutions to the end-of-life concerns each of us had.  And we would be able to receive the support we needed to design our own strategy for successfully navigating our final life passage.

By the mid 1990’s I had enough of these groups under my belt to create a pilot program for a nonprofit organization I had founded, PARADIGM; Enhancing Life Near Death.  I called it the Access Program.  It was seminar/support group hybrid, a two-hour a week commitment for ten weeks.

With the help of a handful of experts in their field, doctors, clergy, nurses, therapists and lawyers, participants were able to face their mortality head on.  They gained perspective on numerous issues related to modern dying … whether it’s filling out a durable power of attorney form, answering provocative questions about sexuality and intimacy, completing a death anxiety survey or personally designing a unique end-of-life plan … they were totally involved and engaged.  And this had a startlingly positive effect on the group members.

After a few years of successfully doing these groups I realized that I was reaching only a very tiny percentage of the people who might benefit from such a program.  Even when I was doing two groups simultaneously, one in the afternoon and one in the evening, I wasn’t able to keep up with the demand.  The only solution was to write a book.

I figured that if I could simulate participation in an actual PARADIGM, group in workbook form, my potential outreach would be enormous.

IJ: Who are you gearing this book towards?

RW: The short answer is — all those mortals out there.

My workbook is primarily for those currently facing their mortality — chronically, terminally ill, elder and dying people.  But concerned family and friends, healing and helping professionals, lawyers, clergy, teachers, students, and those grieving a death will all benefit from joining in.  Because, as we all know, none of us is getting out of here alive.”

IJ: The way you designed the book is unique.  What was your thought process for coming up with this idea?

RW: As I mentioned, it was imperative that The Amateur’s Guide To Death And Dying simulate participation in an actual PARADIGM, group.  Just writing a book about my experiences or my philosophy about living and dying simply wouldn’t cut it.  There were already a lot of those kinds of books in the marketplace.

If I was going to do this, it was going to have to be something really unique.  It was going to have to fundamentally change the conversation.  It was going to have to give those who were without a voice a chance to speak out about their concerns.  And it would have to advocate for the holistic self-determination for those facing the end of their life.

The most exceptional aspect of The Amateur’s Guide is its format.  Readers become part of an on-the-page support group.  Ten diverse fictional characters, representing a broad spectrum of age, race, and life situations inspire strong reader identification and provide essential role models for enhancing life near death.  This unique presentation exposes the reader to a myriad of life situations and moral dilemmas that arise as one faces his or her mortality head on.

Besides the group process, six presenters, each an expert in his/her field, offer timely advice designed to help the reader make the end of life less an intimidating process and more a rich, poignant transition.

IJ: What are you wanting people to take away from the process you put them through?

RW: I hope the reader will be able to celebrate our shared belief that living well and dying well are one and the same thing.  I hope the reader will find his/her voice as well as the confidence he/she needs to engage others in their end of live conversation.

I know that conscious dying has become kind of a buzzword these days and maybe it’s even lost some of its original meaning.  I think conscious dying means learning how to relinquish control before circumstances wrestle it away from us.  In many cultures detachment is an art form.  In many religious traditions detachment is a virtue.  Perhaps there is something here for each of us to consider.  Ultimate control has little or nothing to do with being able to manipulate externals, which I’m sorry to say, also includes our bodies.  Ultimate control is about inner peace and wellbeing.  And these are not dependent on being “well” or being “whole”.

And just to be clear, I’m not talking about adjusting deathbed pillows so that dying people can strike heroic poses for the edification of onlookers.  I’m talking about achieving a good death in the context of real dying—with all its unpredictability, disfigurement, pain, and sorrow.

IJ:What sort of reactions have you had so far with the book?

It’s all been exceptionally positive so far, even the reviews I’ve been getting from my end of life professional peers.  This kind of surprised me at first, because the book is such a radical departure from everything else in the genre.  But everyone seems to be enjoying the refreshingly new take on this age-old problem.  They love the interactive aspect of the workbook.  People are telling me that the fun, engaging yet poignant style of the book is helping them work through their own issues.

IJ: For further support, after reading the book what do you suggest people can do?

RW: Here’s the thing.  If you read through the whole book, if you participate in all the discussions, if you do all the homework and exercises you will, at the end of the book, be prepared for and have the confidence to discuss all your end of life concerns with the significant others in your life.

You will have everything you need to break open a discussion with your lawyer about estate planning and advanced directives.  You’ll have everything you need to address your intimacy needs with your intimate partner.  You will have everything you need to open a discussion with your spiritual advisor about your faith.  You will have everything you need to have a frank discussion with your physician about palliative care, comfort care and your thoughts about assisted dying.

The Amateur’s Guide To Death And Dying can be used to start your own group of people who want to face their mortality; even if that group is made up of just one other person.  You can see the ripple effect this will have, can’t you?  I hope the reader will take every opportunity to share what s/he learned with all those who might benefit, because, as you know, there are a whole lot of amateurs out there.

If you are interested in purchasing the book here’s the link:  The Amateur’s Guide to Death and Dying

Complete Article HERE!

Ruling a victory for monks, brings end to ‘casket cartel,’ says lawyer

A federal appeals court ruling in favor of Benedictine monks who had been blocked from selling their handmade caskets by Louisiana’s state funeral board “is a victory for the monks as well as for free enterprise and entrepreneurs” in the state, their lawyer said.

“And it puts a nail in the coffin of the casket cartel,” said Darpana Sheth, an attorney with the Arlington, Va.-based Institute for Justice, which represented the monks pro bono in the case.

In a unanimous opinion, the 5th U.S. Circuit Court of Appeals ruled Oct. 24 that a five-year battle by the Louisiana State Board of Embalmers and Funeral Directors to stop the Benedictine monks of St. Joseph Abbey in St. Benedict, La., from selling handmade, cypress caskets was either unconstitutional or unauthorized by Louisiana law.

The only question remaining to be determined by the three-judge appeals court panel was a legal technicality, Sheth told the Clarion Herald, newspaper of the New Orleans Archdiocese. The 5th Circuit asked the Louisiana Supreme Court to determine by January if state law authorized the state funeral board to regulate casket sales.

The law requires any business selling caskets in Louisiana to be a licensed funeral home that employs a funeral director and has a casket showroom. The monks twice had gone to the Louisiana Legislature to amend the law, but those bills never got out of committee, so they filed a lawsuit in 2010.

“The court, out of an abundance of caution, wanted to make sure before it rules on constitutional grounds that the state board could even regulate the sale of caskets when that’s all someone (such as the monks) does,” Sheth said. “In its opinion, the 5th Circuit said very strongly they can’t find any reason to uphold the constitutionality of the law. The court rejected all the arguments put forward by the state board in support of constitutionality.”

“It’s a win-win for us, as well as an answer to our prayers,” said Benedictine Abbot Justin Brown. “It also confirms the feelings we’ve had all along that this was the right thing to do. We had a right to sell our caskets, and the courts are upholding that right.”

The Benedictines of St. Joseph Abbey have made the caskets for decades to bury their brother monks, but public interest in the caskets began in the early 1990s and has grown over the years.

In 2007, the Benedictines launched St. Joseph Abbey Woodworks, headed by Deacon Mark Coudrain, a master woodworker, to begin making caskets to sell to the public.

The Louisiana State Board of Embalmers and Funeral Directors presented the monks with “a cease and desist” order, which led to the monks’ ultimately unsuccessful efforts to get recourse from the Legislature and their lawsuit.
In 2011, the monks received a favorable ruling from U.S. District Court Judge Stanwood Duval, who struck down the Louisiana law, saying it created an unfair industry monopoly.

The state funeral board appealed to the 5th Circuit, saying the law protected consumers by ensuring that any caskets sold were the right size to fit into Louisiana’s oddly shaped, above-ground crypts.

Deacon Coudrain said he was thrilled that “common sense” had prevailed in the 5th Circuit ruling. The woodworks project turns out about 20 cypress caskets a month, and all the notoriety the casket case has received has helped business.

“It doubled what we thought we would be selling,” Deacon Coudrain told the Clarion Herald. “Right now we’re selling about 20 a month. This is absolutely common sense. Common sense is what drove us to this point to say that this didn’t make any sense and was really an injustice to the monastery.”

The deacon said the support the monks have received across the state has been encouraging.
“Monasteries are not known for suing states, you know?” he said. “We’ve gotten excellent feedback. We’ve had people buy caskets just because they’re so angry that others are trying to stop us. We’ve also gotten a lot of good feedback from funeral directors. A lot of them were very supportive and helped us out.”

Deacon Coudrain said several monks and volunteers were hard at work making the caskets when they got word of the court decision.
“We’re free to pray and to offer prayers of thanksgiving,” Deacon Coudrain said. “We can also pray for those we are making the caskets for. We’re just a bit freer to do that now. That’s what we do when we’re making the caskets — pray for those we are making the caskets for.”

The federal case will be stayed pending an answer from the Louisiana Supreme Court on the question that the 5th Circuit posed. The appeals court set Jan. 22, 2013, as a follow-up deadline.

Complete Article HERE!

End-of-life system is needed in Wisconsin

By Charles E. Cady, Joseph Hansen and Steve Hargarten

This is in response to the Oct. 17 Journal Sentinel article “End-of-life medical care initiative prompts worries about abuse.” The current status of advanced planning for end-of-life decisions is a system that is woefully lacking, and where tools exist, they are of limited utility.

Autonomy is a fundamental bioethical principle: Patients have the right to make decisions affecting their health care, including deciding on the level and type of care they want. The principle of autonomy is no more important than in end-of-life decisions.

These decisions should ultimately be made by the patient but clearly benefit from discussions with health care providers, family, religious leaders and others important in a patient’s life. These decisions should reflect the individual’s goals as guided by his or her personal values and beliefs.

The Wisconsin Medical Society’s Honoring Choices Wisconsin is in keeping with the importance of autonomy, and we fully support this. However, Physician’s Orders for Life Sustaining Treatment (POLST) also must be moved forward in Wisconsin.

As emergency medicine physicians, we have found that the current system of communicating end-of-life decisions is lacking. In practice, it is the opportunity for clear communication of a patient’s wishes at the end of life that is most challenging.

Wisconsin’s do-not-resuscitate (DNR) law is very limiting. While it is the only tool mandated to be recognized by paramedics and emergency physicians, its utility is minimal. The order is only active once a patient has lost his or her pulse (in other words, is already clinically dead) and only pertains to the withholding of CPR. It offers no assistance with regard to other care for a dying patient. Wisconsin advanced directives lack precision, are not orders that can be acted upon by a paramedic and can be very confusing in an emergency situation.

The power of attorney for health care (POAH) system is also imprecise. While this system is a very important component of end-of-life planning, it is limited in emergency situations. Following direction from POAHs is not permitted for paramedics. In an emergency situation, the POAH may also have a hard time remembering that decisions are to be based on the patient’s, not the POAH’s, wishes. Logistically, in an emergency, the POAH is often difficulty to contact.

Physician’s Orders for Life Sustaining Treatment are clear and concise orders that can (and should) be acted upon by emergency personnel. They have been successfully implemented legislatively in 15 states. They take the pressure away from a POAH to make decisions in an emergency and alleviate that sense of personal responsibility for death.

They eliminate the vagueness that is commonplace in current advance directives. They also provide for decisions about care before someone actually dies. Most important, they help plan for the last moments of a patient’s life when clarity in planning and comfort are paramount.

Along with our paramedic colleagues, we encounter patients at the end of life on a daily basis. We see that end-of-life planning is limited. When end-of-life wishes are clearly described, it is an honor to provide that care.

However, these situations are the exception rather then the rule. Consequently, our ability to follow a dying patient’s wishes is limited. The result is often prolonged, painful and futile efforts that may not be desired.

In order to avoid these painful situations and to promote discussion of end-of-life planning, we strongly support efforts to successfully implement POLST in Wisconsin.

Complete Article HERE!

UI students learn end-of-life planning with Honoring Your Wishes program


Planning for death comes at the end of a life, right?

Not always —University of Iowa students in a class have begun to take a closer look at what they would want at the end of their lives in the pursuit to better understand death and how it affects all those involved.

Death and Dying — a class in the School of Social Work — is participating in a program called Honoring Your Wishes for the first time. This program is under the leadership of the Iowa City Hospice.

“In America, we have this idea of invisible death,” said Karli Jacobsen, a UI senior enrolled in the course. “Nobody really talks about it. So the whole point of the class is to get educated about the different kinds of death.”

The goal of the program is to consider what people would want if they were suddenly ill or injured and could not communicate. If the person chooses to, the end result is an advanced-care directive, a legal document in Iowa. The choices made beforehand must be followed.

“This is a way to ensure that people’s health-care preferences are honored and to also relieve family stress at a time of crisis,” said Jane Dohrmann, the director of Honoring Your Wishes.

The students in the class are only required to attend one meeting with an advanced-care planning facilitator, beginning the discussion of their future wishes. Students are also asked to think about whom they would want as their health-care agent — the person who makes the decisions when they are unable.

“You can’t cheat death,” said UI senior Victoria Castillo, a student enrolled in the course. “It’s going to happen. So you might as well be prepared for it.”

Many students take the class because they believe the knowledge they gain will help them in their future careers.

“I don’t really have very much experience with death, and with my field, I am going to come across death a lot,” Castillo said, who is majoring in social work. “I think it would be really nice to be able to have those open conversations I’ve never had before — before I have to do it with a client.”

The two students all plan on continuing the program after their required meeting is finished.

Anyone can speak at no cost with a volunteer advanced-care facilitator as long as they are 18 years old.

“I recommend this process for anyone 18 or older because we don’t know when we might have a sudden illness or injury and not be able to communicate,” Dohrmann said. “This process ensures that there is a person in place that you would want to speak on your behalf. Otherwise, it’s by default whom the medical personal might contact.”

Jacobsen said it can be hard to think about death at such a young age, but once the topic is brought up, it can be a relief.

“Starting the conversation would probably be the hardest — once you start thinking about it, it’s not as hard,” Jacobsen said. “It’s relieving for me because I know I’m putting stress off [my loved one’s] lives if this were to happen.”

Complete Article HERE!

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.”

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